What a week

I am really fighting to keep my eyes open but why? Maybe subconsciously I don't want to let go of Friday night and by letting myself go to sleep, when I wake up, it will be Saturday and so the weekend will have begun. Friday evening is my most favourite night of the week. I get home from work and I know I can blob out and that there is no work for the next two days. For these next two nights (Friday & Saturday) I can stay up for as long as I like without having to worry about going to work the next day. Its 8.12pm and I am lying in bed, Ember lying beside me in amongst the colouring pencils and books. My eyes are so heavy I can't really concentrate on colouring in -

I can hear the girls talking and laughing amongst themselves. One of our nieces is here, chilling out with my girls. I love it when she comes up, whether it is by herself or with her older sister. Their dad passed away five years after David, he was the baby of the family. He also was very young when he died. It has always been very important to me that his girls spend time with us and know that they are such a big part of our lives and are welcome any time. I have said it before, when David died, it was like we no longer existed except for a couple of people or the very occasional visit and so having experienced that, it was important that these girls and their mum never felt that way. They have certainly faced more than their fair share of adversity and have come out the other side. If there is one family who deserves something good to happen to them, it is this family...

Its been a fairly busy week...full on at work, my infusion on Wednesday - nothing out of the ordinary. Same issue with not being able to find a vein easily. I happen to mention they had used the knuckle of my first finger before and so they were able to find a vein there again. Its a little uncomfortable especially when they are putting the lure in but its not so bad where its unbearable. If thats what has to happen, then thats what has to happen. For the sake of having to do something which is going to help strengthen your bones which will hopefully prevent the cancer from sneaking in there, then I say a bit of discomfort is more than worth it. When I hear people complaining about the silliest things, I think how pathetic their life must be. I was one of those people a while ago, and in all honesty, I probably still am at times. We all have our moments where we feel the need to grumble about something.

I had my CT scan yesterday, to rule out anything sinister which is affecting my tummy. The pains are still ongoing but because I have decided to continue with the higher dose of pain meds, it masks the tummy pain...until the meds wear off or usually when I wake up in the morning - it can be quite painful. Same issue as always, not able to find a vein. The nurse had my hand in a bucket of hot water, trying to bring out my meager offerings. And man, were the offerings extremely meager and so she kept topping the bucket up with more and more hot water. It must have been in there for almost 20 minutes. Another nurse came along to see how she was going and so nurse 1 just handed me over (excuse the pun!) to nurse 2 without even trying to put a needle in. It amazes me how they can feel
the veins, when your not able to see them especially when they have those plastic gloves on. Both nurses asked why I don't have a portacath in. I told them I had already asked the oncologist if this was a viable option for me, but he had said at this stage 'no', it wasn't needed'. Eventually a vein was found and the lure inserted with no problems. I will get the results when I go to my next oncologist appointment on Monday 10th July. On one hand, you want them to find a reason why these tummy pains continue without it being a sinister reason and on the other hand, you hope like hell they don't find anything. But if they don't, what the hell is it? Why is it continuing for so long? Will I ever get an answer? And I mean 'come on' - what the fuck...haven't I had enough to contend with already for goodness sake! I mean I know I'm good humoured and most of the time go around with a smile but that does not mean all the shit needs to be dealt out to me! C'mon mate, spread it around. Actually, lets re-phrase that, how about no shit to anyone, or maybe heap it on those pieces of scum who deserve it!

I have caught up with a couple of mates during the week, as it hasn't happened for the last month or so at weekends. I have decided I will not go to dialysis tomorrow night with my mother-in-law and will instead enjoy a quiet weekend at home. Last Saturday night we had a lot of waiting around for the taxi to pick us up from the hospital (she has a taxi provided for to get there and home again, and so I jump in as well) and by the time I got home that night, it was 11.00pm and I was shattered. Its not a hard thing to do and in all honesty I don't go anywhere on a Saturday night, but I feel the urge to stay home and rest. I often ignore my intuition only to find out later I shouldn't have but also with working a 40 hour week, I have to remind myself to be kind to myself and ensure I rest up, so I am
able to get through the next lot of 40 hours of work.

I'm surprised my eyes are still open...its coming up for 10.00pm and I seem to have a second wind or maybe a 'wee puff' of wind, nothing to get excited about. Its probably because the girls had come up to the bedroom for a chat and a cuddle with the cat and have now buggered off to K'Mart to do a spot of retail therapy. I envy their enthusiasm and energy. Sometimes I have to psyche myself up to do the simplest of things and other times, I find I can just get up and go. Those times are great - I think they might be increasing. It must be when I am tired or when my body needs some downtime, that I argue with myself about whether to do something or not.

Friday 30th June 2017 - 10.07pm

Blogging

So often I feel the urge to pull on my bloggers hat even when I don't have anything interesting to 'blog' about.  I am happy to sit and ramble on about nothing in particular and I wonder how interesting or un-interesting it is to sit and read someone else's thoughts.  As the blogger, it is so therapeutic to get thoughts and feelings out and sometimes it almost feels like I feel a compulsion to write. And when I think it is pretty boring shit I am writing, I remind myself the reason I do this. So you can understand where I am coming from but I especially write with my sisters in mind - knowing while we are only divided by a stretch of ocean, they may as well be on the other side of the world.  There is no popping into each others for a 'quick cuppa and catch up' and so knowing I have a platform where I can unload myself upon, is such a relief.

It has been a fairly emotional week - with David's anniversary last week, then Dads birthday the next day and yesterday it was mum's 26th anniversary.  No matter how long someone is gone for, you will always be impacted by their loss in some way.  There is some truth to the words 'time is a healer' although you certainly don't believe that when you are in the throes of grief and nor would I ever repeat those words to someone who has recently lost a loved one.

I don't know that I will ever fully recover from losing David but the grief has definitely changed.  To begin with it was so consuming and it was almost impossible to function in normal day to day tasks. Now 16 years later, I feel such a sense of sadness that he isn't here and on what he and the girls have missed out with each other.  He will always have my heart but over the years I have learnt to share my heart with my husband whereas I think I had held a part of it back.

For the last 3 or 4 days, I have been taking the painkillers I had been prescribed a month or so ago but after the awful experience of becoming so painfully constipated, I have fought and fought with myself over whether to go back on them.  But finally after being in so much pain in my joints and especially my right hip, I decided I needed to do something.  Otherwise what sort of quality of life do I have? I can truly say it has made such a difference.  To be able to move around and to not be filled dread at the thought of getting up out of my seat.  Even with taking regular pain relief, my tummy still lets me know it hasn't come right and makes it objections felt first thing in the mornings.

Another weekend is upon us.  It has been a relatively busy week at work and I am ready to have a bit of a wind down for the next two days.

One downfall of taking this pain relief is the tiredness I experience.  I left work 20 minutes early yesterday as I could not cope any longer.  When I finally got home I changed into my pj's and had a snooze in bed before getting up for dinner.  I struggle with the tiredness again today but know there is a weekend waiting for me at the end of the day.

Friday 23rd June 2017 - 4.17pm

16 years long

16 June...a date that as soon as I see it, can change my emotions from happiness to immense sadness. And that is exactly what happened this morning when I was at work. It was just after 8.00am when I happened to see the date on the bottom of my computer screen and I immediately felt like I had been slapped in the face and memories just came flooding back. Memories of losing my beautiful David...my partner of 13 years and the precious daddy to our two beautiful daughters. I could feel the emotion build up inside of me and I felt like I was going to break down and cry. As I have said numerous times before, I dispise crying in front of people and luckily I was with a couple of workmates and was able to tell them what this day meant for me and was able to talk it through with them. I don't think they realise they 'saved' me and how much having that talk with them meant to me...

It is so hard to believe he has been gone this amount of time. I see how much he has missed out on his girls and how much they have missed out on not having their daddy here with them. He was such an incredible person, a larger than life personality. Anyone who met him fell in love with him, not in a sexual way (although probably that too!) but he had a friendliness that exuded so much warmth and he had this ridiculous laugh that you couldn't help but laugh along with. Trying to explain that to the girls is impossible. I remember buying a journal soon after David died and I wanted to write stories for the girls about their dad. But I soon realised I would never be able to capture his personality with pen and paper.

I look at the girls and I am filled with pride at how beautiful they are, both inside and outside and know David would be so proud of them. I am grateful for the relationship I have with them and often wonder if it would be the same if David was still alive. I know when he died, I immediately became so protective of them. Our first Christmas I told everyone they were not allowed to cry in front of the girls. That they had had enough sadness and Christmas Day was to be a fun filled day, it was so important to me that my babies had this fun day after having been surrounded by so much sadness and a mother who was so grief stricken or angry. We all had to have our cry in private and we did. We had a wonderful day...

I see their father in them...my big girl has his relaxed attitude and way with children, my baby girl looks like him and has his 'grumbly' side. I so wish they had a chance to know their dad and to not just be a picture in a frame.

David - how I wish you were here to be a presence in our lives, to be a presence in the lives of your family, amd not just the girls, as you are missed desperately by so many - your mum, your brothers, cousins, my family, so many...how can I ever thank you for giving me the two most precious gifts - our girls. I hope I have done them and you justice in how they have been brought up. I know you didn't really want to leave us but I also know the beliefs you had and believe you would have been happy going to your maker, knowing full well that your girls and your mum would be well looked after. We weren't perfect by any means and many a time in the old days where you could be an absolute shit, but often when someone dies, we are inclined to put them on a pedastal and forget the bad times and many of those we had until we finally got our crap together and had our babies...but by that time, your time with us was almost over but we were unaware of it.

So my beautiful David, one day you and I will have a date where we will meet again and be able to watch our precious girls together and be in a place where there is no such things as strokes or cancer - where we will be free of anything negative. And so until that time my love, you continue to be in my heart and continue to be so much a part of our lives - your name is mentioned often with many. You should be proud of your older brother who has stepped in to our family and has looked after us especially during this trying time. He is a wonderful emotional support and seems to know what to say when I am feeling at my most vulnerable.

16 years today...unbelievable...

Forever in our hearts xx

Friday 16th June 2017 - 8.05pm

Holiday over

Its 5.00am Monday morning. I've been awake since 4.00am and just waiting for my alarm to go off in another half an hour. Back to work today after having had last week off. I have had a lovely break and back to reality.

Tomorrow we have a contingency from work heading off to Honolulu to attend a conference. I was supposed to be part of that contingency but when I heard from the doctor that they were worried about my husbands lungs and sending him for tests etc, I made the decision not to go. I'm really glad I made that call as I am still not feeling up to scratch myself. Weeks later my tummy is still giving me trouble...constantly sore everyday. Not all day, but everyday it aches at some stage and at varying degrees of pain. It usually sits at about a '5' but the other night when I was at the hospital with my mother in law it was reasonably intense subsiding after about half an hour. Even as I type this now, it is sore...no rhyme or reason. I am waiting for a CT scan but I got the impression the oncologist wasn't expecting to find anything and that it was more to reassure me that it was not the spreading of the cancer. Sometimes it hurts after I have eaten, and then there are times like this when it's just there when I wake up. Whatever the cause, I am glad I am not going to Honolulu as I would hate to have been a wet blanket. I am grateful to my boss for allowing me the opportunity, as it is not somewhere that would normally be in the realm of possibility for me unless I was to win lotto.

The strength of my aches have increased and I have been putting off taking stronger pain killers due to the side effects I experienced last time (extreme tiredness and constipation) but yesterday I gave in and took a couple. OH MY GOD!!!!! WHAT A DIFFERENCE... so I think I will take some more this morning depending on how I feel when I have been up for a wee while. I usually take all my tablets once I get to work and have had breakfast.  I wish there was a tablet I could take to make my memory better! According to some of my BC paperwork, this is also another side effect of the exemestane I am taking. I have always had quite a bad memory, especially after David  passed away but then with the five surgeries I had from my bilateral mastectomy in November 2015 to my last surgery in February 2016, I had assumed was the cause of it becoming worse. A combination perhaps...surgeries and medication. It worries me especially with work but I have to find ways of dealing with it and putting plans into place to help jog it along.

Oops my alarm has just gone off. I usually give myself another ten minutes before dragging myself out from the warmth of my blankets and getting ready for the day. Wonder if I will be exhausted by the time I get home.

I have had a wonderful week off - caught up with a few people, even bumping into an old friend while sitting in the dialysis unit with my mother in law on Saturday night. It was so unexpected but it was just lovely. I haven't just sat at home blobbing and getting bored nor have I raced around like a lunatic ending up feeling like I need a break from my break. It was just perfect...

Monday 12th June 2017 - 5.41am

Dialysis unit tonight

As I sit here in the dialysis unit with my mum in law, and seeing her along with others here, hooked up to a machine circulating their blood to cleanse it, for up to four hours at a time, three times a week, it is yet another reminder how lucky I am.

My affliction does not keep me bogged down to one place for hours at a time. I can come and go at whatever time I want on whatever day I want for as long or as short a time as I like. My mother in law has recently started dialysis, three days a week, for four hours at a time. Tonight as I sit with her, her treatment started somewhere between 6.00 and 6.30pm, and will finish about 10.30pm. We will then have to wait for a taxi to pick us up to take us back to her place. So it will be well after 11.00pm before she gets home. How ridiculous is that...but this is what she needs to do to get better as she has been extremely unwell and tired for months now as the state of her kidneys have gotten to a point of no return. I have come to keep her company tonight as I know full well how boring hospitals can be. I am not able to do much these days, but this is one thing I can do and is certainly no hardship. I have brought my crocheting with me and my iPad so have plenty to keep me busy and time is going by quite quickly. It definitely is not dragging and I think mum is enjoying having some company, even if we don't talk all of the time.

Silly as it sounds, there are times when I don't mind having cancer as at this stage, it does not impact my life hugely - depending on my mood I guess you could say. As I sit here watching these people (very covertly), and seeing how tied they are to these machines - I am grateful to be me.

Mum is very chirpy and chatty - she looks so cute with the blankets tucked up to her chin. She is a feisty lady at times, has no bones about telling people exactly what she thinks but she has this other soft, gooey side to her. We are close, very close - my girls adore their nana and she adores them, she adores all of her grandchildren, regardless of how old they are. I love this woman dearly and at times it has been tough seeing her as unwell as she has been. I hope the benefits of doing dialysis start to kick in for her soon.

Thursday 8th June 2017 - 8.44pm

Feeling so relaxed

It's Queens Birthday weekend and I have taken the next four days off as annual leave and I feel so, so relaxed! Just knowing I am having a break from waking up super early each day and being out of the house at 7.00am.

I am chilled out in front of the TV and doing a bit of crocheting and just enjoying it all. I look forward to going back to work next week with the much needed rejuvenation.

Monday 5th June 2017 - 12.56pm

Rest In Peace

Rest In Peace to a beautiful young woman, who has now left this world and has entered what we can only hope is another dimension we call heaven. Where illness does not reign, where you enter disease free. Your body no longer riddled with whatever horrible infliction you may have suffered with while on this earth. How hard was it for this young woman, to finally close her eyes and go to sleep and leave her loved ones behind...Especially having no choice but to leave her babies without a mother. How heartbreaking that must have been for her...how unfair is this life...I want to wrap those children up in my arms and try to soak up their pain - it brings back so many memories of seeing my girls grieve for their daddy, it truly breaks my heart...I did not know this lovely lady personally but we were sisters of circumstance with our common ground being breast cancer and being a part of our metavivors sisterhood. It is such a wonderful place to go to when you need to vent or ask questions from those that 'just know' but there is that side where it can get you down and drain you with the sadness of it all. There are some days where I am unable to make myself read the posts, or sometimes simply not have the energy to reply...

Cancer takes so much from us - with the ultimate sacrifice being our life. It doesn't just take from those of us diagnosed but also from our loved ones too as they are the ones left behind having to maintain some semblance of life...struggling through day to day and managing that terrible thing called grief.  In the end, death gets us all...no matter whether you have cancer or not...it is inevitable, as was the passing of this lovely lady.

Rest In Peace Kirsty - may your loved ones be surrounded by lots of love and warmth to help them through this sad time.

I am so saddened to hear of your passing...

Thursday 1st June 2017 - 9.47pm

Life lately

As I lie in bed I can breathe a sigh of relief...it has been a pretty intense few weeks worrying about shit. Today my husband was diagnosed with moderate emphysema...I'd be inclined to say it is slightly more than moderate but not bad enough to say 'severe'. It's a diagnosis I had expected so it was confirmation that my concerns about him were spot on...but my ultimate fear was that they would find cancer. Nothing was seen on his x-ray and so now he gets referred to a lung specialist and must try to stop smoking to prevent his condition becoming any worse. It will be interesting to see what the specialist says. So I feel a huge sense of relief..for now anyhow.

A number of weeks ago, I had been suffering from some pretty intense pain which has now quietened down, although it seems to have elevated slightly again, from what it used to be originally. For the last three or so weeks, I have been experiencing tummy pains, fairly constantly. They may come and go throughout the day, they may stop for a day but then return again. They aren't severe, but are a nuisance and can get me down as they continue throughout the day. I had my infusion today and the oncology nurse was able to squeeze me into an appt afterwards with one of the consultants. He seems to think it does not present as anything to do with the cancer (thank goodness). Because he isn't too sure what is causing it, but there are a couple of options, he will send me for a CT scan (more to eleviate my concerns but also just in case) but has given me a few more tablets to take each day. I think this takes the count up to 11 tablets each morning...I feel like my mother...dad used to say that its a wonder that mum didn't rattle with all the tablets she took, now thats me...

All in all, I feel like it has been a good day. It has gone pretty much as I had hoped.

I had to make a phone call the other day to the company where I have my life insurance. I hadn't advised them that I had breast cancer and I was unsure whether I was obligated to or not. So I rang them to ask for a copy of my policy. While I was talking to her, I told her of my diagnosis and because it was well after my policy had begun, they will still pay out on my death. This had been worrying me for quite a while but then I would get to work and once I am there, everything else goes out of my mind. Luckily this particular day,  I remembered. I was terrified that hubby and my girls would lose out on their inheritance. It isn't a great deal but it is something and will hopefully ease the load a little once I am gone. When I got off the phone from that call, I wanted to break down and cry. It brought home to me that this is what I have to do, that this is real and that I have to be sensible and think ahead and ensure as many arrangements as possible are prepped and ready to go. Make sure all my t's are crossed and i's are dotted. Much the feeling as having to prepare my Will...its reality isn't it and when unexpected things crop up, like unexplained tummy pains and so on, you can't help but wonder if your reality is a little closer than you had anticipated. 

This is not a fun journey by any means. While most of the time I plod along as normal, sometimes I feel like the reality of it is hitting home more, or that the symptoms are well and truly kicking in. The mood swings are terrible, I meant to ask the consultant today for something but it was more about my stomach today. I go back in another 28 days so will definitely discuss it then. While I don't get depressed, I get fed up with the whole cancer thing and I crave to be my old normal self. I still miss me...I hate being in pain but the pain comes from the medicine that is helping keep the cancer at bay. I get shitty at anyone and everyone because of the same thing, those meds keep me well. I try not to eat bad shit because sugar is not supposed to be good for cancer, actually your health in general. I have no oomph to do anything or go anywhere although I have forced myself to go to a number of family functions lately. I'm not fun anymore...

My mate called round the other night and we were talkng about my older daughters 21st which is coming up later this year. It won't be a big affair and will be with those that are closest to her but it is something that I have been putting money away for and starting to organise. I said to my mate, "what if I'm not here when my baby turns 21 or what if I am too ill to do it"...and where a lot of others would say "of course you'll be here!", she just calmly says "well we'll put one on for her" and left it at that. I just smiled, she is such a no nonsence, straight up person and at times that is what I need.

Life is ticking along. There are good moments and laughs in amongst it. I have next week off work to rest up to get me through the next three months and I look forward to the break. I think this is something I need to make sure I do regularly. Divide my holidays up evenly throughout the year to give myself time to rest up. It gets exhausting working a 40 hour week, alarm going off at 5.30am and up before 5.45am, leaving home at 7.00am. Two more days at work and then nine glorious lazy days off - WOO!!!!! I CANNOT WAIT.............

Thursday 1st June 2017 - 12.08am