A common cold

My husband and I have both picked up a case of your run of the mill common cold. But with him recently diagnosed with emphysema and my having metastatic breast cancer, is the common cold now still a common cold? I think in hubbys case, it could easily kill him - if it was to travel to his chest, causing pneumonia. His specialist we saw has told us, you don't die from emphysema but die from conditions relating to it. I.e. Pneumonia on the chest, weakness of the heart to name a few. Lightbulb moment, that will be why he had a cardiac ultrasound recently - no results as yet - does that mean no news is good news? Or is it the state of our health system and we have to wait a while for an appointment to receive results? Luckily hubby had an injection not long after his diagnosis (cost us an arm and half a leg) being a preventative against pneumonia, so hopefully that has lessened the effects of this cold. I have been watching him like a hawk as he was much worse than me but looks like he is on the mend while I feel like I am going slightly backwards.

My question to myself and if any of you can answer it, then please do - because of this stupid cancer in my bones, will it affect things as simple as the common cold? Or am I imagining things and being a bit of a drama queen? Or could this have been a particularly nasty strain of cold and because I had the flu shot back in April (provided free of charge by our health system - thank you), it has lessened the effects? My head pounds constantly, I am coughing up phlegm (ugh) regularly, I am hot and cold and I just feel 'not quite right'.

My return date to work was Wednesday 27th September after being on annual leave but ended up staying home that day as both hubby and I had a crap night, coughing simultaneously, headaches, sore throat, feeling nauseous, hot then cold and so on...I had a great sleep Wednesday night and felt reasonably human Thursday morning so decided I would be ok to go to work. I mean who stays home from work just with a cold? This is something I have always struggled with - should I go, should I stay? A cold really? But then should I go to work and pass my bugs around especially with having air-conditioning? I don't really know, but despite whatever I have felt crook with, I have always felt guilty staying home when I am sick...how daft is that? Even when the girls were little and had to stay home from school, I used to feel guilty. I was sweating profusely getting ready for work, having to change tops as first one felt too heavy. I mean even though we are in spring, it is the crappy cold, wet spring weather we are experiencing...but anyhow, I get to work...and I am struggling thinking I have made the wrong decision but knowing if I had stayed home this day as well, I would have been so, so riddled with guilt. I take my pain killers every four (or so) hours to stop the headaches coming back but my body is aching and I am flutuating between being hot and cold. The afternoon is much better and I am thinking "yeah, I am ok, I am getting my work mojo back", so glad I am back for a short week before having to kick into a full 40 hours. Come home, cook dinner, potter around, get my work clothes out for the next day - looking forward to going to work because it will be Friday and the weekend already! Go to sleep Thursday night and then bang! Wake up about 3.00am, head is pounding...try to ignore it cos I am cold and don't want to drag my ass out of bed to take painkillers...then having to shove the blankets off cos I am roasting...at 4.00am-ish I finally drag myself out to take tablets, but my body is aching and I just feel crappy, can't put my finger on it but know I don't feel right but eventually go back to sleep. Alarm goes off at 5.30am and in my head I am screaming "noooooooooooooo"

I make the decision to not go back to work today, but I don't like it. But I also feel quite strongly that I would struggle sitting up for 8 hours trying to get work done. My attendance has been a bit erratic (for me) over the last six or so weeks and I feel very uncomfortable. But again I need to remind myself to be kind to myself. A common cold is not just a common cold for me anymore...or is it? This was my original question...either way, life has changed for me, in many ways - my health is very precarious but the worry is always there that work will think I am more of a nuisance. To date, they have been so wonderful and I don't ever want to take that for granted. So I think if I can stay home today and the weekend, tucked up warm, drinking lots of fluids, then Monday morning I can put my big girls pants on and get back into the flow of things. It has been a hectic few months and I have learnt from it - a much needed reminder that while I am well, I do have a life changing condition and need to manage myself in such a way that I don't exhaust myself anymore than necessary. I need to be able to work while I can. There will come a day when I will either have to cut my hours down or resign but I hope that is not for a long time yet.

So in the meantime, I will remind myself I am not feeling that crash hot and will do what I can to feel much better and prepped ready to get back into work Monday morning and try to 'stop feeling guilty!'

Friday 29th September 2017 - 11.31am

Celebrations officially over

Well, recent celebrations have officially come to an end today as my sister and niece have left to fly back to Melbourne this evening...Our little house has been bulging with visitors and luggage but I wouldn't change it for anything! I hadn't seen my Melbourne family since my cousin and I went over there in March, and I think the last time they were here in NZ was February 2016 when they came over for their own daughters 21st in Hawkes Bay and where all the drama of hospital visits, diagnosis of being metastatic (advanced cancer, stage 4, terminal - other terminology) and at the very last minute actually losing one of my implants to an infection, all unfolded.

This has been an awesome surprise for my big girl and a chance for all of us to catch up and to meet my other nieces young man. (they did a bit of travelling around NZ before the party and left a few days after).They got to see whanau from out of town, whom they wouldn't normally get to see, as these people travelled to attend the 21st. Still, I go on about how wonderful this night was...what a bloody awesome celebration!

Saying goodbye this afternoon was a very quick affair as the shuttle driver turned up early and then it was pissing down with rain, and we are all full of colds so it was quick hugs and kisses all round, shoving them into their shuttle vehicle and us scuttling back inside out of the rain. My little house felt so empty, devoid of people and luggage and then reality set in and the realisation that they had gone hit me and I wanted to sob my heart out. I shed a few tears and left it at that. I watch the time now, wondering has their plane left the ground yet? No point texting...just a waiting game until they arrive back in Melbourne where my sister will make contact to let me know they have arrived safely.

Sisters sharing a laugh

Brother-in-law and nieces - 'speechtime'

Aunties, nieces and our newest family members, lovely young men chosen by our girls

Back to reality tomorrow with the return to work. So glad I took this time off as it was sorely needed (s'cuse the pun - 'sorely'). It has taken until this passed Sunday to come right, otherwise suffering from immense aches and tiredness. Interestingly enough, my sister who is four years older than I am and who does NOT have cancer, also suffers from aches - having trouble getting up in the morning, getting up after being on a mattress on the floor. So perhaps a part of what I am going through is also age related with a twist of cancer meds! While I have a head cold and do not feel in the least bit ready to return to work, it is probably the best thing I can do. I will start back on a short week and in all honesty, once I am there I will be good as gold, and enjoying seeing everyone and catching up.

So back to normality now with just a few twigs - having to put things away in their proper place...Organising the 21st is over with, until the next one in another 2.5 years away. The focus will be on Christmas now, and all the public holidays allowing a few long weekends for some downtime. Between now and then a few projects coming up (hopefully) so watch this space. I will need to look at managing my tiredness a bit more as I was being quite social prior to the birthday which is wonderful but need to space it out a bit more. And then 'hello!' Another new year! Should I be happy about it, that I am making it to another one, or should I be nervous, because it is inevitably shortening the time I have left...best not to think like that...just take each day as it comes and enjoy it.

LOVE YOU MY WHANAU, THANK YOU FOR JOINING IN THE CELEBRATIONS AND HOPE TO SEE YOU SOON xxxx

Tuesday 26th September 2017 - 7.22pm

Surrounded by love

I have been doing a lot of thinking about my daughters 21st on Saturday night...and we had a small family gathering for dinner on her actual birthday on the Tuesday night. Both of these occasions have made me realise how surrounded by love we are and admittedly we all get wrapped up with what is happening in our own lives but its lovely to know that we have people in our lives who mean so much.  FAMILY - family means everything to me. As I listened to the speeches at the party on Saturday night, it really brought home to me how many loved ones we have in our lives. I so often get caught up in worrying about what we don't have, mainly money...instead of focussing on what we do have.

Right from Friday night and Saturday morning when hubby's brothers were here helping him with the umu, to my 'young friends' coming round Saturday afternoon to help decorate, my sister having arrived from Melbourne, prepping food in a motel unit, my cousin who lovingly carved and presented  both my girls with a taonga, to hearing the speeches made and the love expressed, it really brought home to me just how lucky we are. I am so busy resenting the people I don't see or hear from, and those that have disappeared from our lives, that I forget to embrace the ones that are here. And while some of these people we don't often see, they are always here when it counts and for that I am grateful.

Family - what does that word even mean? To me it means 'love'. You don't need to have the same blood flowing through your veins to be family. My husbands family - god I love these people so much, I couldn't love them any more if we were blood related. I have friends whom I regard like family - we don't live in each others pockets, but they are always right there when I need them. I don't have a 'best friend' as such and I don't think anyone regards me as their best friend. Other people talk about their besties, I don't have one and yes it does upset me sometimes but really what does that even mean? I don't think I have had the time to invest into a friendship for many years as all my time has been invested into my immediate family, especially my girls. My husband has always done his own thing, mainly going off to play darts, in the weekends. It used to really piss me off when the girls were younger because this was family time  and I wanted us to do things as a family unit. But thats why we have such a close relationship now. The girls and I have accepted that this is how hubby is and it hasn't affected his relationship with them. He loves them dearly and they, him. I think he has a much closer relationship with my girls than he does with his own sons. He has three sons, of whom he never hears from. Not on his birthday, or fathers day or Christmas and I think that is pretty sad. I'm sure that hurts him, I don't ever bring it up so I don't really know what he thinks. Maybe I am more of the resentful type than he is, and he just accepts things as they are whereas I dwell on things.

But where money is important, it isn't the 'be all' and 'end all' of life. Not having it can put a huge strain on things but how can we survive without the love and support of others. Everytime I think of those who stood up and spoke on Saturday night, and what they had to say, it warms my heart...and then there are those that were here who didn't even have to say anything, you just know by them being here, that we are loved.

Thursday 21st September 2017 - 10.25pm

Celebration part 2...

I just wanted to share a few more moments from the 21st...

My sister, two nieces and boyfriend (first time meeting everyone and first visit to NZ) with my girls and I, and younger daughters young man. The two boys got on like a house on fire and both made each other as crook as a dog by the end of the night...

Monday was my next oncology appointment and infusion so my sister was able to come along and see for herself what happens. Its one thing to read about it but its another to experience it firsthand, and so she found it very enlightening. Nothing new...I did ask the oncologist if I have tumour markers as I have heard others talk about them and to begin with, I didn't have any. But mine are very good, they are stable. Apparently it isn't the number they look at but more how stable they are and so mine sit at around 8-9-10 which is good. Its another indicator of how well I am and I am doing very well!

I am on annual leave until my family go back to Australia which is Tuesday of next week. The party and being a party girl for the night has taken a lot out of me. I am still suffering from some pretty major aches and tiredness. So just chilling. While it is the birthday girls actual birthday today, and we are having a few family members come up for dinner, I am chilling out on the bed leaving everyone else to do all the work. Once I have finished updating here, I will traipse down to join the others.

What a wonderful time...how lovelyto have my family from Australia here - its like we are never apart. My older niece and her young man have flown back to Melbourne this afternoon, they start back at work in the next few days. I look forward to chilling out for the remainder of my time off work and even when I go back, it will be a short week - three days.

On that note, I will leave it there and join the rest of the whanau. I may even have a brandy and ginger ale...

Happy 21st birthday to my beautiful big girl 💜❤️💚💛

Tuesday 19th September 2017 - 6.20pm

Celebrations

Today is my big girls 21st birthday! Wow, how can that be? The time has gone so fast. Thinking of the day she was born, knowing how wanted she was and how excited David and I were at the thought of our baby's arrival. We didn't know the sex of our baby, we wanted it to be a surprise although David was quite determined he wanted a girl. I remember feeling quite pressured...what would happen if I gave birth to a wee boy instead??? I couldn't very well put it back and try again! I never realised how much in love I would fall with this wee child and how much she would change my life. Even now I am often wowed by the love I feel for my girls.

We had a wonderful celebration on Saturday night. It turned out so much better than I ever hoped for. My sister and family surprised the birthday girl as the party began and everyone else was surprised too. The less number of people who knew, the less chance there was of her finding out they were coming over. Only a small handful of us knew they were coming over so it was very cool. My sister helped me with platters for the table, getting them ready from a motel room for goodness sake! But she is very much into cooking and making food look pretty - something we certainly don't have in common. I had a vision and it came together. While David is no longer with us, he was very much a part of the night. We had his ashes outside with flowers and a photo board of him with the girls and a bottle of tequila which used to be one of our many drinks of choice in the old days. Speeches were made with a lot of references to him and how proud he would be of his big girl - of both of them but of course the focus was on the birthday girl. Many tears were shed along with many laughs.

For a night I forgot I had an awful illness and I danced the night away, drank lots of brandy and ginger ale, played beer pong with the young ones having to scull a few because I was so bloody hopeless and had a few tequila shots for David. I finally crashed out to bed about 3.00am, almost unable to lift my feet. I was so sore....my feet were throbbing something terrible, my whole body ached and I was like a frozen block of ice. But I don't regret a moment of it! I had so much fun and I wanted to do it all over again! I didn't even wake up with a hang over, but I did only have a couple of hours sleep so had to zonk out for a few hours later in the afternoon.

Perhaps the most emotional part of the evening was when it was time for the official presentation. I didn't want o get a conventional, mirror key. I wanted something personalised and so put the feelers out. My cousin from Opotiki put his hand up and we spoke about how we should do this and what we thought would be appropriate. As long as both heritages (maori & niuean) were represented and David, I was happy to leave it up to his interpretation. So he presented a taonga to both the girls,  not just the birthday girl - which I was completely blown away with and I don't think there was a dry eye in the place...simply beautiful and I can never express how grateful I am. The girls love this uncle dearly, and even the wood (totara) has come from his dads farm (my dads brother) where my sister and I spent many family holidays so everything about these carvings mean so much.

Really???

Why does shit have to happen after hours??? Or right on the weekend, or in this case...both!

Here I was last night, enjoying having the house to myself - girls out, hubby gone to play darts and knowing I was on my own just for a few hours, settling down to revel in the stillness when suddenly I heard this 'BANG!' followed by a flash of light and as I very cautiously tippy toed out to the kitchen, could smell a bloody burning smell...my heart jumped into my mouth - I wasn't sure if the house was going to blow up or catch on fire, I was terrified and instantly wished I wasn't alone.

I figured out it was both the fridge and oven, and messaged my baby girl who was with her young man and his family. Don't really know what I was expecting her to do! But just needed to off load to someone. She came home and we both just sat around not quite knowing what to do!!!! Hubby in a slightly pissed state when he got home checked the fuses and proceeded to mumble in a drunken slur that the fridge and oven weren't working but everything else was!!!! I couldn't help but laugh cos I already knew that...but I felt better just knowing he was home.

Its is now Saturday morning and I have rung an after hours electrician and awaiting his arrival at fhe cost of a call out fee, travelling charge and so much per hour on the job! But hey, someone is on their way to fix it and with having a houseful of people next weekend, am grateful it was this weekend and not next!

So thats the beginning of my weekend...

I have been counting the days down to Friday, I have been so tired and am really struggling to get up in the mornings and just hanging out for that break so I can rejuvenate to continue to get through work.

Oops its Saturday afternoon now. After the sparky left, I was having issues with the internet and so while trying to fix that, completely forgot to post this...so continuing on...

I came home early on Thursday about 2.00pm-ish. I was exhausted and could hardly keep my eyes open and felt very tearful. When I got home, I crashed out for a few hours and felt much better when I woke up. Think perhaps all my socialising the previous week and with everything else that is going on and has been going on over the last month or so is just catching up on me. I really need to remember I have limitations now and have to manage myself so I can get through a day or a week without too much of an issue. I was sussing out WINZ recently online, and if you have a terminal illness, you can only get a benefit if you have been diagnosed with less than two years to live. God, how crap is that! You work all your life, pay your taxes, scrimp and save so you can not be reliant on anyone else to have to help you out, but when the chips are down, the government agencies are not willing ro help you out. And yet for years and years my taxes have gone to pay for those blood sucking fuckers on benefits who don't want to get off their arses and get a job. Those that feel it is their god given right to sit at home and be paid for it. I'm not talking about those with genuine cases - I was one of those genuine cases! When David died...I was on the widows benefit and I hated it! I appreciated the help, but as soon as my baby girl turned 5, I was looking for a job and got the first one I went for. I was earning less working than I was on the benefit but I felt vindicated because I was earning my own money. It was a wage packet, not a hand out.

So how long do I need to continue working so I can pay the bills? I don't have someone who has my back...who will support me financially when I am unable to continue on (not talking about my girls - they should not be expected to in a financial sense)...and if I am not going to make it to retirement age, I would like some down time where I can chill out and 'enjoy' some time out. Not that I am saying I am ready to do that just yet but it is something that is often sitting in the back of my mind. While my husband is wonderful and I love him dearly, I cannot rely on him to worry about working and supporting me financially and that is disappointing. I believe I have always been a strong person and have had more than my fair share of shit...it would be great having that worry off my mind and I feel it is deserved but in some things, we are on different pages. Still, lets worry about that when the time comes...and I know it will be me who does the worrying. Even in death I will still be supporting him... Some people just get the better end of the stick eh...not me unfortunately. Never mind, forget that - money isn't everything and be grateful for what you do have. I am rich in love, so much more than what a lot of others have.

Saturday 9th September 2017 - 4.41pm

Flat as a pancake

There are times when I question who is the real me now? Where has the old me gone? But today, I have felt an overwhelming feeling of sadness and didn't feel like making any effort to talk to anyone. I don't even really know why. I know that recent events at work have really affected me, more than I ever expected - actually in all honesty, I never expected this to happen at all, it never occurred to me that it could. But I don't think that's it - it could be a contributing factor. I had written in my previous post that I have been in a "can't be arsed with bullshit" mood but it just won't go away. My baby posted a link on facebook about some drug for those with mbc but the injustice of how it costs $60,000 a year - $5,000 a month and how we as a family personally are unable to afford it. And I just broke down at work and cried when I read it. I quickly brushed away the tears before anyone saw me, but I just felt like I wanted to cry my heart out forever. Periodically something hits home and makes me realise the predicament I am in. Not that it ever goes away, but I can blase about it at times and then 'bang!' It hits me...and probably because my baby girl had posted it with her very eloquent message. And then when I was talking to a workmate about it, I cried again. I feel like a wrung out dishcloth.

I wanted to run away from work...didn't feel like going today. I am so hanging out for some down time, where I can just relax, recupe and rejuvenate until my next holiday. Another eight days of work with a weekend in between so not too long but it is getting so damn hard to drag my ass outta bed in the mornings.

I don't have a lot of interest in anything- I feel so far removed from everyone and everything (almost) and feel a sense of outrage at the simplest of things. I have been hating on the cancer for a few weeks now, hating how it affects me. I get so tired of the tiredness and of everything being sore, and not being capable of doing very much. Even taking the clothes off the line yesterday was a bloody mission. This does not feel like a life - it feels like an existance.

I sound like a broken record...

Monday 4th September 2017 - 5.46pm