Acknowledging and dealing with

Today is ANZAC Day - a day to remember our men who went away and fought in the war, in order to give us a better life...for those who gave the ultimate sacrifice and for those who came home and had to live the remainder of their lives remembering the atrocities they had seen and experienced. Our dad fought in World War II and was one of the lucky ones to come home and make a life for himself. Dad never talked about the war and in all honesty, I never asked. I never even gave it a second thought..I was always quite proud of the fact that my dad fought for his country but I never really stopped to think about what he had seen. So to me, ANZAC Day has significant meaning and while I have never attended a Dawn Parade, it doesn't mean that my heart and thoughts are not there with them all. The disappointing thing is that so many people don't respect these historic, life changing events and instead of making the most of the freedom we experience in our little country, because these men went to war and fought, they are determined to screw it up - their own lives and dragging others down with them.

I was watching 'Ellen' clips this morning and one of them was about a woman who works at Facebook. Her husband had died unexpectedly 2 years earlier and in her grief, decided to write a book. Everything she said sounded like she was talking directly to me, not just about the grief of losing someone you love but with how my being diagnosed with cancer has affected how people handle it. So it got me to thinking...and I felt I would like to share with those of you who decide to carry on reading, my take on grief and how the actions of others since my diagnosis has affected me, and perhaps what I wish people would do or say. But remember, this is my take on it - it's not to say one size fits all and so everyone who is diagnosed with something awful will want this...

Grief is an unimaginable thing...in this instance I am talking about the grief of losing a loved one. Our mum and dad died many years ago, mum in 1991when I was 26 and dad in 1995 when I was 30. There was a difference in how I grieved, while I was devastated at the loss of my dad (he died of lung cancer) losing my mum was almost too much to bear. She was like the matriarch of our family who kept us all together, and then when she died, it was like our family fractured. I thought I could jump in and piece us all back together again and ended up having a break down. It manifested itself by my becoming very anxious about small things which caused me to come out in rashes and ended up having to go onto medication for a short period of time. It was tough...

And then David died...nothing could prepare me for that. Whatever I felt from losing mum and dad was insignificant to the feelings I had when we lost David. I don't mean that in an awful way, or perhaps I should have said multiply those feelings by a million and then you may grasp how devastating it was. I was lucky enough to have my sister and her husband where the girls and I would crash upon often because I hated being at home. During the day would be fine because it was like hke he was at work, but having to do simple things like cook dinner so my babies could eat, I just didn't want to do it...

The girls were 2 and 4 years old when he died, and they also grieved for their dad. My big girl would go to bed crying and saying "where's my daddy, why won't he come home" and my little baby would just cry and became very clingy, not even wanting to be left with those she was usually so comfortable with. So not just dealing with my own grief, I had to deal with the girls as well. In the evenings I couldn't wait to put them to bed so I could just curl up and cry but when they did go to bed, I hated the loneliness. I hated the curtains all being closed because I felt shut in, but nor did I want to leave them open because we had a nosy neighbour and I felt like she was watching me constantly. No one ever really came to visit in the evenings, or rang to see how we were coping.  Everyone was busy with their own families yet mine had been ripped apart. Apart from Davids mum and a cousin who would come and pick the girls up and take them out, I never heard from anyone in his family. It was like once he died, I ceased to be one of the family. Sometimes now when I am in amongst them, I remember but then I also know it wasn't out of malice, it was just just thoughtlessness. Until you have been through it, you have no idea how it feels. So the loneliness was very real. In the beginning you have lots of visitors but it's after the funeral when everyone goes about their normal lives and you are forgotten or become a passing thought. We are all guilty of it, I know I am...I mean well and have good intentions but they don't eventuate. Something as simple as a phone call, popping round for a cuppa, being there available with a shoulder or a hug when it's needed. Maybe not waiting to be told it's there but just giving it. Taking something for dinner, it doesn't have to be anything elaborate - it is so appreciated. I'm not quite sure where I would be now if I hadn't had the girls. I had to carry on for them...they were babies and needed their mummy. I think I was an awful mummy for a while, snapping and being bitchy and it was something that my big girl said to me one night. She was really upset and she said"why don't you like us anymore mummy?" and honestly, if you had punched me in the guts, it would not have hurt as much. I remember sitting down with her and apologised for being so grumpy and tried to explain it was because I missed daddy and I promised I would try to stop being so grumpy. And I remember from that moment on, it was a turning point for me. I started counselling to channel and express my feelings and I knew my babies deserved to be treated with a lot more respect than they had been getting during that time. Grief is a terrible thing but we all need to get through it in our own way, but with the love and support of others around us.

Since being diagnosed with cancer, and at this stage, I can look back and say it has been interesting. During some of it, it has been frustrating, disappointing and scary. I have been told so many times that people don't know what to say to me, that they can't handle the fact that I have cancer. Well hello! I don't get a choice, I have no choice but to confront it each and every day. My girls don't get the choice, my husband doesn't get the choice, my sister doesn't get the choice. I remember when dad was dying, his mates from the RSA wouldn't come and visit him in hospital. It wasn't until a close family friend went down there and went off his rocker that some of them traipsed up to see him. It wasn't about them and not being able to handle dad dying, it was about dad seeing his old mates for the last time.

Even with this wretched crap inside my bones, I am still the same person, I still laugh and say inappropriate things. All my conversation does not revolve around what has happened but if you want to talk about it, I am happy to. I prefer it to be acknowledged...You are not going to hurt me or remind me that I have cancer by asking me about it. I don't ever forget it...but these days it does sit in the back of my mind a lot more. A simple "how are you doing" or "have you been to any appointments lately" - or the slightly harder questions "how long have you been told you'll live", it is human nature to be inquisitive and to want to know these things. If you don't want to talk about it, then that is cool too. I have cancer, it is part of me because it is in my body, but it does not define who I am...I am a person with feelings. And those feelings have gotten hurt because people that I expected better from just do not bother with me for whatever reason. A simple "hey, how you doing" works wonderful.

And I don't think you can get away with not experiencing some kind of change when you go through something like this...when you are diagnosed with some kind of illness regardless of what it is, where it will have a significant affect on your life, whether it be now or further down the track. It changes your perspective on things, on life. Some things become more important and other things become less important. I have very little tolerance for bullshit and negativity these days but I think I need to try and put a lid on it as my lack of tolerance can be slightly inappropriate at times. I recognise it but just a pity that those it is directed at don't get it. Human nature...

The moral of the story? Take a little time to think of others and show in some way that you care. It does not need to cost a lot or even take a lot of time.

And remember, this is my perspective only...

Tuesday 25th April 2017 - 4.54pm - ANZAC Day

Menopause is a bitch

I know...'be grateful' I said earlier today, 'I'll forget I have cancer and will get on with life' and I absolutely meant it...but bloody hell, the bloody medication I have been put on has put me into menopause and while I don't get the hot flushes (and hopefully I won't), my sleep pattern is all up the Doo-dally! I am tired, I want to go to sleep but I am just not bloody well able to...I have been lying in bed with the light out but sleep will not come. I lie here yawning my head off, my eyes feel like they are hanging out of my head but still nothing. And so while I lie here wide awake, I can feel my feet throbbing...they feel exactly like something out of a cartoon where you can see them pulsating - they are sore! I've taken a couple of painkillers but they won't kick in for a while yet. Hopefully I'll nod off to sleep before then. My feet ache terribly these days, sometimes I feel like a parrot, repeating the same shit over and over. And I really have to be grateful (!!) that this is all I have to experience for now.

Hmmm, when I think about it, I am experiencing all 'seven dwarfs of menopause'...I said to hubby today that my head has been itchy and I felt like I had nits...and tonight I said my tummy feels bloated! So I'm not going crazy or being a hypochondriac...wow, I'm feeling quite vindicated right about now!

The girls kept telling me yesterday that I was very 'prickly'...think that comes under 'bitchy'. The 'psycho' definitely comes in when I'm having a mood swing! Thank goodness not too often! The one symptom I have down pact is 'forgetful'. OMG, I am hopeless! I thought it was something to do with my five surgeries I had between November 2015 and February 2016 and maybe it did to begin with. But between then and now is when I started the exemestane tablets and zoladex injections, therefore throwing me into menopause of which forgetfulness is a side effect...definitely no hope then...

It's now 11.28pm and my eyes are no closer to going snoozies and my feet are still throbbing like a cartoon characters...alarm is due to go off at 5.30am. Could be a long day at work tomorrow but at least I get to rest on Tuesday (Anzac Day).

Oh cripes, now to top it off, hubby is coughing up a storm...oh well who needs sleep anyway - it's over rated:) (not!)

Sunday 23rd April 2017 - 11.54pm

A wee post note

I was so angry and upset on Friday night after reading the update about my metavivor sister and I continue to feel upset for her and her loved ones. And each time I log into Facebook, I dread seeing 'that' notification.

But I just want to remind myself and those around me, that I continue to be in good health. I have had fantastic results from my scans, and so I tell people I almost feel cancer free these days! I feel great and if I hadn't been diagnosed, I wouldn't even know I have it.

So while I am sad for others, I am in a good space, body, mind and soul. And for that I am grateful...

As for now, I will pretend I don't have it, and will continue to live my life.

Sunday 23rd April 2017 - 12.42pm

Fuck...

One of my ladies is dying...one of my metavivor sisters is dying, I mean literally dying. The cancer has pretty much spread everywhere throughout her body apart from her brain and she is getting things into order. She is putting photo albums together for her babies - babies! Not tiny babies, but her children are only young, school age, not teenagers yet and they are going to lose their mum very soon.

The lump in my throat is overwhelming and my vision becomes blurry as the tears roll down my face, and I try to cry quietly so I don't wake my sleeping husband up. I cry for a woman I have never met before but with whom I have exchanged messages with over posts on a closed Facebook page. I cry for her because my heart breaks that she will never see her children grow up, will never see her children marry and will never see them have their own children. She won't see them this coming Christmas...and if she does, it will be from another place and won't be able to hold them in her arms. Her children will grow up without their mum beside them, they will have a nanny for Christ sake (which she has organised herself). This is so unfair and I HATE it...I hate this cancer shit with a passion!

You know what fucks me off...that low life scum get to live, they get to kill people and rape people, they get to abuse our beautiful innocent children, they get to kill our beautiful innocent children, scum and filth who take drugs and abuse their bodies on a daily basis..and then there are those that willingly take their own lives. How dare they! When some are fighting to stay alive and who want to live...who are putting that poisonous chemo shit in their bodies in the hope it will get rid of this disgusting 'cancer' from their bodies or that it will shrink tumours to give them more time...how unfair is this...truly...I ask you, how unfair is this? It's not just cancer that robs families of loved ones, but what is it that causes these things to happen. Why do some get it and others don't?

There are so many things I want to say in a message to this sister, but I have no words...I am scared of saying the wrong thing, I am scared of thinking too much because it hurts too much, I am scared of thinking of the pain she will leave the others in when she finally leaves them, I am scared in the knowledge that one day soon, us metavivor sisters will read a message from one of her loved ones to say she has passed, and right now it terrifies me to read how far her cancer has progressed throughout her body. It has infiltrated her body everywhere...what a nasty, dispicable disease this cancer is. It worms its way through leaving no stone unturned.

I am so sad for this family...my heart weeps for them...literally

But I am also angry...and hateful...hateful of this disgusting disease and the damage it incurs. The damage it does to your body, the head spin it puts you in and the ultimate sacrifice of taking your life from you and leaving families to grieve.

This is so unfair...

Friday 22nd April 2017 - 12.07am

Thought for the night

This sounds a bit weird, but going through this cancer journey has been kind of interesting. As a young girl, I was introduced to 'cancer' with a close friend of mum and dads. I remember her being frail and then I remember going over to the house when she died. I have no concept of a time frame of her being ill, but maybe this is where my idea that people who have cancer are 'frail'. Even in this concept, I have surprised myself. I don't look in the least bit frail, in fact am the complete opposite - looking pretty damn robust and healthy.

In all honesty, I have never given much thought to how someone who has a serious or terminal illness, copes with that diagnosis including the fact that they will one day die from it. I always assumed that it was just accepted - both the illness and their impending death. It hasn't been until my own diagnosis that I have realised it's not quite that simple. You need time to get your head around it and to hopefully come to terms with it. I have heard of people who never accepted what was happening to them and so they spent their final time, however long that may be, being angry, self pitying and angry. That's not to say it's wrong...I don't think there's a wrong way or a right way. It's just 'your' way and how you choose to deal with it.

And I always thought that because people knew they were going to die due to an illness, they simply accepted this is their fate. But it's not quite that simple either. The whole picture is something you need to learn to live with, to deal with and to get on with.

You experience a whole range of emotions - some of them all in one day. It's very much a roller coaster ride and those around you can be swept up in that ride with you.

Some people are very private with what they are going through. For me, I have chosen to be very public with my thoughts and feelings. A lot of this is because I want people to learn from my mistake but also I have always been a talker. When David passed away, I talked about him constantly, I probably drove people crazy but I feel that it helped my grief immensely. I need to express how I feel, otherwise I feel like it's building up and one day I will explode and probably at some poor undeserving, unsuspecting person.

In some ways, I wish I had taken the time to stop and talk to people more about their illness and how they felt. But I have always felt awkward asking those hard questions - I thought maybe the questions were too personal. I think about Sandra, my cousins wife who died last year. I am haunted by the fact that she had cancer for so many years and while I would always ask her how she was, or whether she had been to any appointments lately etc, now feel I didn't really ask enough questions. But I guess you only feel as comfortable asking as the person does, letting you in.

As for me, I am an open book...if you want to know anything, I am happy to give you an answer. If I don't want to answer it, I will tell you. So please, if you ever have any questions about this journey as I call it, don't be afraid to ask - whether I know you personally or whether you may be someone who has stumbled upon this blog.

Often I receive compliments from people, saying how inspiring I am, how brave I am, how strong I am but I don't see that. I often say "I am just me"'. I am not a person who is down for long and I still have a life to live. I have a beautiful family and friends who don't deserve to have a miserable, sad person in their life and "life is for the living". And what's that saying - "a smile a day keeps the doctor away!"

This has been a massive learning curve for me and I hope to continue learning as I go along. I find myself looking at people and wonder if they have an  'invisible affliction'...as things aren't always as they seem. Definitely gone are my preconceived ideas that all people with terminal cancer are ill and frail looking. Looking at myself in the mirror and seeing the other ladies at the Sweet Louise meetings are living proof of this...

Wednesday 5th April 2017 - 9.00pm

Latest results - April 2017

What a relief! After all that worry, my scans (bone and CT) have come back clear!!! That means for now I am stable and the cancer is under control. Apart from a cure becoming a reality, this is the absolute best possible news I could ever wish for!

When the oncologist told me, I wanted to cry with the relief of it and you know me...I hate crying in front of anyone. I thought it was a good appointment - it was a different guy and he was quite thorough with his questions. He said I will not need any more scans for another 12 months unless something of concern crops up and we will continue with this set reigime for now. I questioned whether or not we should look at having a port put in, due to the ongoing issues with trying to find veins. He said he didn't feel it was too necessary. If I was having treatment more often, then maybe so. But having a port could also put you at risk of getting infections, which I don't need. It's become a dirty word to me now! And I am more than happy with that. While now it is taking a number of times before they have success finding a vein, they do eventually find one and this is really just early days yet.

The weight that falls from your shoulders is amazing. I had butterflies in my tummy last night just thinking about today. I don't really know why. In my heart of hearts, I knew I felt too well for anything sinister to be happening, but there is always that fear, you just don't know.  So yay!!!! I am rapt and relieved all rolled into one!

And so it was time to go off for my usual 'every 28 days' zometa infusion. It took three goes before they were able to find a vein to put the needle in and apart from that and the time it all took, everything went right as rain.

Perhaps rain is not the word I should be using. While I was being infused, it started pouring. I was blissfully unaware of it until it was time to leave. And unfortunately we had parked in the bottom oncology carpark, down the hill and so the three of us got soaked to the skin getting back to the car. What a drenching...I was supposed to drop my mate / notetaker home before dropping hubby home and then going to work, but by the time we got home, and by the time it would have taken me to get changed and sorted to go back to work, it wouldn't have been worth it. It's a pain in the butt in one way, I dislike being away from work any more than necessary, and the big boss is so good to me, I always feel a bit guilty. I used to feel like this too when the girls were little and got sick, and I had to stay home with them. While I knew they came first, work is also important...but actually I am feeling very tired and weary and with the grey yucky weather outside, I am glad to be home tucked up on the bed for the remainder of the day.

And lastly before I sign off on this post, I just want to remind everyone the importance of learning about the symptoms of breast cancer and of being vigilant about your health. Breast cancer is not just about finding a lump - some lumps are so small, they can be undetected. Other symptoms are the 'orange peel' effect around your breast, discharge from the nipple, change in shape and a newly inverted nipple. Check your breasts regularly, this could save your life! I cannot reiterate this enough. I had a lump, a huge lump, for months and I did nothing about it. I now have to live with the consequences of that...those around me are also affected by my ignorance. Please, I want my diagnosis to have meant something - educate yourselves and don't be embarrassed to examine yourself.

                     Remember, "BREAST CANCER KILLS - DON'T LET IT BE YOU"


But in the meantime WOO FUCKING HOO - YAHOO - I am clear and as healthy as I can be!!!!

Wednesday 5th April 2017 - 3.05pm

Food for thought

I've been posting quite a lot this week. Not really sure why and not really with much to say. Writing this blog is like an online diary and helps to eleviate any thoughts and feelings I may be experiencing at the time.

This evening I am sitting out in our back yard, under our 'fairy' lights on my own. Just my big girl and I home, she's watching TV and I am just enjoying being out here - I can hear the traffic as it goes up and down our road. While it's reasonably busy for this time of the evening, it's almost quite comforting.

I have lots of thoughts swirling in my mind. One of my husbands cousins has just sent me a random messenger message with a two minute video on how beautiful life is - it has lots of lovely inspiring sayings. It was such a random and unexpected message with a wee note. Such a simple gesture, yet it makes me feel lucky to know I have people in my life who care about me.

My two daughters and youngest daughters boyfriend surprised yesterday with a brand new iPad Pro...I was completely gobsmacked and am still blown away when I think about it. Such a generous gift and none of them are particularly flush for cash. My old iPad was second hand and I have thrashed it. It has been dying a slow death, videos take forever to load, sometimes don't at all or cut out while watching them. I was trying to reply to all my birthday messages the other night and had to give up before I threw it at the wall. I had been wondering how on earth I was going to manage  without it when it once the old one died and knew there was no way I could afford to buy myself a new one. While it is without a doubt a very generous gift, it is also the thought that has gone behind it. They knew how much I liked using the iPad and so have taken it upon themselves to replace it.  I don't know if I am making sense, but the thought is generous in itself. I had put a status up on Facebook to tell everyone, and one person in particular replied with a really lovely message. She said it was a reflection of the love and thoughtfulness I had instilled in my girls in their upbringing. I thought that was such a lovely thing to say. And I appreciate the fact that 'B' puts in with the girls. While he has been with my daughter for the last two years now that does not mean he has to do this too, yet he does. I am lucky to be surrounded by such thoughtfulness. 

I have been thinking about how blessed I am in my life. I've been reading about a 15 year old boy in Gisborne who died of cancer in March last year and reading some of his inspirational writings. At least I have had a chance to love and be loved, to experience the joy of having children and seeing them grow up into beautiful young ladies. It doesn't seem right does it, that a child's life gets taken away from them before they have had a chance to live it. It is so unfair...life is so unfair at times.

I've been feeling a bit unsettled since being home from Australia. I recently lost a friendship. This is a friendship that I had for over ten years. I don't even know what has happened, I won't go into detail but due to my pride and stubbornness and the way I now see things, I don't feel inclined to make contact to see what is wrong. I don't believe I have done anything wrong and these days I have more pressing things to think about. When you are given a diagnosis of a terminal illness, it completely changes your thinking. You don't feel the need to deal with the silly little idiosyncrasies in life, and you soon learn what is important and what isn't and life becomes very black and white. I now grieve for this lost friendship, I have been down this road before, when my David died. I lost two very good friends due to their not approving of my relationship with Davids brother, who I am now married to and with whom I have been with for over 14 years. It was tough but I got there in the end. I think this will be the same. Why do people choose such poignant times in my life to cut me from their lives...then again, does that say something about me as a friend, why I have lost these friendships? Or is it simply that people come and go from our lives, even for a short time. I don't really know the answer.

Having said all that, I continue to be in a very good place. Just waiting for Wednesday to get those results but I remain feeling in good health and satisfied in life. I have much to be thankful for and I am. There is room for improvement on the 'forgiveness' front however. One day maybe...I try so hard to be the best that I can be, to be a positive influence and carry a positive energy around me but at the end of the day, I am human and the cap slips at various times.

Saturday 1st April 2017 - 10.51pm