I finally came to the realisation that working fulltime is just too much for me now. After crashing and burning on Tuesday, when I went back to work on Wednesday, I talked with my supervisor. We hashed shit out which was great - he has been great actually! So I now work Mon to Thurs so had this last Fri off work and my god, I cannot believe how much of a diffference it feels to have three days off, but also knowing it can be ongoing if I wish it to be. I should have said I am trialling it for a wee while as well as tweaking my morn starts. Depending on how I feel - if I get to work early like I normally do, I finish 8 hours later...if I need to lie in a bit later, I will do and have a slightly later start. Hopefully these things will make a massive difference to how I get thru the week.
I have lowered the dose of oxynorm I am taking and given up the oxycodene as it was a terrible combination. I still take paracetamol 4 hourly and unfortunately I am getting break thru pain at various times, but after the fog I have been living in over the last month, I feel so much better and am quite happy to stay this way for a wee while. We’ll see how it goes. Maybe after the new year, I’ll re-look at it with my GP but for now I need a break and am enjoying being awake.
I am also thinking my upped happy pills may be finally kicking in...or its a combination of everything. I even went out on Fri and started my Christmas shopping. I’m buying bugger all this year but I could feel some of my Christmas mojo creeping back in - I’ve always loved Christmas, from when I had my beautiful babies.
Thank goodness I feel a bit of normality again...its bloody awful feeling so crap...
Sunday 25th November 2018 - 4.08pm
Sunday 25 November 2018
Tuesday 20 November 2018
20-11-18
I had the all clear from my CT scan weeks ago so why aren’t I happy and celebrating the great news and making the most of life?
Struggling terribly at the moment...in many ways. Still trying to suss pain meds out that don’t zonk me out for most of the time - not achieving much in the way of results so far. Drove home from up north on Sunday, feeling dangerously tired. Not realising until we were on the road. Scary shit...stopped a few times but only helped for a few mins or so. Managed to get home in one piece luckily but it was bloody terrifying.
A family member gave me a pep talk the other day when I mentioned I was feeling quite low...so easy for everyone else to give advice when your not wearing those shoes.
Doc has upped my happy pills but am still having various issues. No enthusiasm to do anything, lucky if I cook dinner, don’t want to go out, feel shut off from everyone, Christmas - ugh, the thought of Christmas shopping makes me want to run and hide.
Work - I’m probably away more than I’m there at the moment which definitely is not me. I am almost ready to quit but unable to afford to. Decisions need to be made...
Even too hard keeping up with this for now.
Crocheting keeping me going...although had a couple of days where I just couldn’t face it. Then you know something is definitely not right. Crochet mojo back...thats about it. Everything else gone.
Tuesday 20th November 2018 - 1.30pm
Struggling terribly at the moment...in many ways. Still trying to suss pain meds out that don’t zonk me out for most of the time - not achieving much in the way of results so far. Drove home from up north on Sunday, feeling dangerously tired. Not realising until we were on the road. Scary shit...stopped a few times but only helped for a few mins or so. Managed to get home in one piece luckily but it was bloody terrifying.
A family member gave me a pep talk the other day when I mentioned I was feeling quite low...so easy for everyone else to give advice when your not wearing those shoes.
Doc has upped my happy pills but am still having various issues. No enthusiasm to do anything, lucky if I cook dinner, don’t want to go out, feel shut off from everyone, Christmas - ugh, the thought of Christmas shopping makes me want to run and hide.
Work - I’m probably away more than I’m there at the moment which definitely is not me. I am almost ready to quit but unable to afford to. Decisions need to be made...
Even too hard keeping up with this for now.
Crocheting keeping me going...although had a couple of days where I just couldn’t face it. Then you know something is definitely not right. Crochet mojo back...thats about it. Everything else gone.
Tuesday 20th November 2018 - 1.30pm
Saturday 3 November 2018
Its been a while
its some ungodly hour of the morning...Sat morning - I have woken up to go bathroom but appear to be feeling reasonably wide awake. Something I haven’t been able to say too much this week. I went for my oncology appointment on Monday and since we didn’t have CT scan results to discuss (scan appointment is on Sunday morning) we were able to discuss changing of pain medication. My pain has gone up again - its up and down like a bloody yo-yo, appears to be no rhyme or reason why and so I had been taking codeine and quite a bit of ot. The down side was that it was making me tired. So the oncologist decded to put me on a slow releasing med called ‘M Eslon’ topped up by ‘sevredol’ if and when required while still taking paracetamol four hourly. I hate it! I can hardly keep my eyes open. At work I am like a zombie fighting to keep my eyes open. Yesterday, my brain was so foggy, I made a number of errors. Not things that needed fixing but being forgetful and instead of doing things together, ended up having to do them separately. Its horrendous driving home, I am pretty much a danger on the roads and I am on the lowest dose of both these medications! I appear to be suffering side effects of itchiness from the sevedol as well which is quietly driving me crazy. I haven’t wanted to quit it without giving it a good go, and will be talking to the oncologist Monday or Tuesday when she rings me to discuss results of my CT scan. Think I might ask to go back to codeine. The other down side of these two drugs is that because they are controlled drugs, you can only be given a months script at a time opposed to getting three months worth of codeine per time. When I get home after work I am so tired, I don’t have the energy to cook dinner and basically go straight to bed and crash out. My big girl had to put me to bed the other night. I had the IPad on my chest, glasses still on, bedroom light on and fast asleep...I don’t like feeling like this, I feel like I am ‘living’ in a fog - its more of an existance and I honestly don’t feel like I can carry on this way. Its not a life. More than once, I have asked myself what is the point...I don’t mean I want to die, god no...but I hate the way I am feeling at the moment. I’ve come to the conclusion that I don’t think I’ll ever be able to come off the anti-depressants. I think the reality of living life with terminal cancer has hit and with it comes the swings and round abouts of it. If this is how I feel taking anti-depressants, how would I be feeling without them?
I wouldn’t say I feel depressed or low even...I simply feel alone, like no one gives me a thought or gives a fuck. It seems like everyone I know, has somebody. Somebody close to hang out with and do stuff with and that I’m not that person for anyone. Admittedly I just don’t have it in me to make contact with anyone so do I have the right to feel the way I do? I am just so damn tired and I don’t feel like going out anywhere. But it feels like everyone else is already out with others and I am forgotten. I am that token person that alive, I’m forgotten about but when I kick the bucket, people will cry and say how mich they loved me and that they’ll probably miss me. Bullshit...
Thank goodness for my crocheting...if I didn’t have that, I’d probably be going mental by now but it keeps me sane. The feeling that people want something that I make, is amazing. I love it! I love thinking up colour combinations. My brain thinks a lot quicker than my hands crochet! I so wish I could either crochet quicker or that I had more time to put into it. Crocheting is my friend...it keeps the loneliness away. I am happy to spend:my weekends stayimg home making blankets.
So I guess it is safe to say, cancer is kicking me in the butt - I’m really disliking the effect it has on my ‘life’. I use that word loosely - maybe I should say existance. It has halved me. I’m definitely not the same person I used to be.
On that note, my eyes are starting to get heavy...comsiderably heavy. Its just come across me which is what happens when I’m at work. Check out my crocheting page on facebook when you have a few spare moments - TaniaL Homemade Crochets.
Take cate and have a good weekend.
Saturday 3rd November - 4.49am
I wouldn’t say I feel depressed or low even...I simply feel alone, like no one gives me a thought or gives a fuck. It seems like everyone I know, has somebody. Somebody close to hang out with and do stuff with and that I’m not that person for anyone. Admittedly I just don’t have it in me to make contact with anyone so do I have the right to feel the way I do? I am just so damn tired and I don’t feel like going out anywhere. But it feels like everyone else is already out with others and I am forgotten. I am that token person that alive, I’m forgotten about but when I kick the bucket, people will cry and say how mich they loved me and that they’ll probably miss me. Bullshit...
Thank goodness for my crocheting...if I didn’t have that, I’d probably be going mental by now but it keeps me sane. The feeling that people want something that I make, is amazing. I love it! I love thinking up colour combinations. My brain thinks a lot quicker than my hands crochet! I so wish I could either crochet quicker or that I had more time to put into it. Crocheting is my friend...it keeps the loneliness away. I am happy to spend:my weekends stayimg home making blankets.
So I guess it is safe to say, cancer is kicking me in the butt - I’m really disliking the effect it has on my ‘life’. I use that word loosely - maybe I should say existance. It has halved me. I’m definitely not the same person I used to be.
On that note, my eyes are starting to get heavy...comsiderably heavy. Its just come across me which is what happens when I’m at work. Check out my crocheting page on facebook when you have a few spare moments - TaniaL Homemade Crochets.
Take cate and have a good weekend.
Saturday 3rd November - 4.49am
Sunday 16 September 2018
Quiet weekend
Its Sunday morning, a little before 8.00am. I’ve basically just woken up properly, after a little earlier dragging myself out of bed to feed the cat. She has sat on my bedside table, and been scratching at any paper on it, knocked my glasses off to the floor, and kept stretching her little paw with claws out, to keep trying to get my attention. Continuing trying to ignore her wasn’t an option...damn cat...Now that she’s fed, she hasn’t left me alone, she’s back - now sitting on my feet! Sometimes I feel so stalked...
Its been a funny ol’ weekend. Been feeling a bit flat and not much motivation. Not that I have a lot any how, but definitely flatter than normal. I had been thinking I was not going to bother getting a new script of happy pills but think that might not be such a good idea just yet. No shame in still needing them. I’ve actually been really good, though pain has been up and down, but continue to play with my pain meds which helps tremendously but am feeling quite disgruntled with my girls. My big girl is still in Australia, not able to get a job so is looking at coming home soon, which is good. It feels like weeks could go by before we touch base with each other. Is that ok? I guess for some people, thats normal...but I’ve always felt like I had a close relatiinship with my girls. Now I wonder...I mean yes of course we do, but our definitions of ‘close’ differ I think. My younger girl is hardly ever home, maybe stays home 2 or 3 nights in a week and thats ok. I want them both to live their lives and do the stuff they want to do, but I can’t help but feel like I have become less of a priority than everyone else. They choose to go and spend all that time with friends...they choose to go out and have dinner with others...I guess they choose to come home but is it out of obligation? Its not like we have quality time together while they’re here. They ‘chat’ to everyone else on their phones. I know its natural progression that your kids grow up and leave the nest but it would be nice if some thought was put into me. What frustrates me is that when I eventually kick the bucket, I know they’ll cry and carry on and wish I was still alive, but it’ll be pointless - I’ll be dead - gone - forever. You need to make the most of someone while they are alive, not wish once they’re dead that you could have more time with them. So yep, I’m feeling a bit down and forgotten about, feeling sorry for myself - remembering how when the girls were little, everything I did, I did for them, which is what you do as a parent. You want to give your kids the best life you experiences you can. I was always taking them here there and everywhere, holidays, day trips, having their friends come and stay - my role has now become less important and I openly admit, I am struggling with it. I used to ring my mum every day, visit often once I had moved out of home - always had time for my mum. It was David who made me realise that my parents wouldn’t always be around and the devastation I felt when mum died, it was awful so remembering the time we spent together brings both a smile to my face and a feeling of sadness.
But its not all doom and gloom. I set up a facebook page to see if I could sell my blankets. Hubby hadn’t been able to work (due to weather) for a couple of months so the realisation of what I was spending on wool, to make blankets to give away to charities hit me with a bang. I totally enjoyed doing it but I was spending $60.00 to $70.00 a week at Spotlight on wool! I can’t continue doing that. I wasn’t quite sure how it would go, or even how much I should charge but so far to date, it has been bloody awesome! Admittedly a number of them have been family and friends but I don’t see that as a bad thing by any means. I’ve had a number of orders and as I reach the end of my orders, a couple more roll in. I am really, really enjoying it. I think I might need to up my prices - to begin with, it was purely to help with the cost of wool, but now I think it would be nice to actually make some money out of them. But nor do I want to charge a lot for them... maybe a slight increase. I’ve even had orders from a couple of ladies whom I don’t know. A friend had shared my page to a community page, very cool. So for the last three Saturdays, I have traipsed off the the mall to post blankets off to various places - South Auckland, Hastings, Wellington, Whangarei and even Australia! How very cool is that...Its such an amazing feeling and the funny thing is whenever its time to hand one over, I feel a bit sad and look at them and think how much I love that particular blanket and how pretty it looks. So I can definitely say these blankets are made with love. My page is called ‘TaniaL Homemade Crochets’. I would like to evolve and maybe do simple baby cardies, booties, and such like but so far don’t have the time to do. I’d love to evolve my crocheting too but with the ones I do, Ican do with my eyes closed. I can’t cope with complicated...my brain gets too addled.
Taking hubby for a hospital appointment tomorrow for his emphysema, its been a while. My next treatment is the following Monday. Next month I am supposed to be going for a CT scan - thats always a bit of a worrying time. I have a bit of a sore throat - had it off and on for a few weeks now, and the roof of my mouth has a weird feeling. Even small things like this make you second guess yourself and wonder if its the cancer spreading. But I continue to feel well so take that as a positive sign and try not to get too bogged down with bad thoughts.
The weather is starting to perk up...spring is definitely in the air. Can’t believe we are in the middle of September already. This time last year we were organising my big girls 21st. Time goes so fast but I don’t want it to go too fast.
Sunday 16th September 2018 - 9.03am
Its been a funny ol’ weekend. Been feeling a bit flat and not much motivation. Not that I have a lot any how, but definitely flatter than normal. I had been thinking I was not going to bother getting a new script of happy pills but think that might not be such a good idea just yet. No shame in still needing them. I’ve actually been really good, though pain has been up and down, but continue to play with my pain meds which helps tremendously but am feeling quite disgruntled with my girls. My big girl is still in Australia, not able to get a job so is looking at coming home soon, which is good. It feels like weeks could go by before we touch base with each other. Is that ok? I guess for some people, thats normal...but I’ve always felt like I had a close relatiinship with my girls. Now I wonder...I mean yes of course we do, but our definitions of ‘close’ differ I think. My younger girl is hardly ever home, maybe stays home 2 or 3 nights in a week and thats ok. I want them both to live their lives and do the stuff they want to do, but I can’t help but feel like I have become less of a priority than everyone else. They choose to go and spend all that time with friends...they choose to go out and have dinner with others...I guess they choose to come home but is it out of obligation? Its not like we have quality time together while they’re here. They ‘chat’ to everyone else on their phones. I know its natural progression that your kids grow up and leave the nest but it would be nice if some thought was put into me. What frustrates me is that when I eventually kick the bucket, I know they’ll cry and carry on and wish I was still alive, but it’ll be pointless - I’ll be dead - gone - forever. You need to make the most of someone while they are alive, not wish once they’re dead that you could have more time with them. So yep, I’m feeling a bit down and forgotten about, feeling sorry for myself - remembering how when the girls were little, everything I did, I did for them, which is what you do as a parent. You want to give your kids the best life you experiences you can. I was always taking them here there and everywhere, holidays, day trips, having their friends come and stay - my role has now become less important and I openly admit, I am struggling with it. I used to ring my mum every day, visit often once I had moved out of home - always had time for my mum. It was David who made me realise that my parents wouldn’t always be around and the devastation I felt when mum died, it was awful so remembering the time we spent together brings both a smile to my face and a feeling of sadness.
But its not all doom and gloom. I set up a facebook page to see if I could sell my blankets. Hubby hadn’t been able to work (due to weather) for a couple of months so the realisation of what I was spending on wool, to make blankets to give away to charities hit me with a bang. I totally enjoyed doing it but I was spending $60.00 to $70.00 a week at Spotlight on wool! I can’t continue doing that. I wasn’t quite sure how it would go, or even how much I should charge but so far to date, it has been bloody awesome! Admittedly a number of them have been family and friends but I don’t see that as a bad thing by any means. I’ve had a number of orders and as I reach the end of my orders, a couple more roll in. I am really, really enjoying it. I think I might need to up my prices - to begin with, it was purely to help with the cost of wool, but now I think it would be nice to actually make some money out of them. But nor do I want to charge a lot for them... maybe a slight increase. I’ve even had orders from a couple of ladies whom I don’t know. A friend had shared my page to a community page, very cool. So for the last three Saturdays, I have traipsed off the the mall to post blankets off to various places - South Auckland, Hastings, Wellington, Whangarei and even Australia! How very cool is that...Its such an amazing feeling and the funny thing is whenever its time to hand one over, I feel a bit sad and look at them and think how much I love that particular blanket and how pretty it looks. So I can definitely say these blankets are made with love. My page is called ‘TaniaL Homemade Crochets’. I would like to evolve and maybe do simple baby cardies, booties, and such like but so far don’t have the time to do. I’d love to evolve my crocheting too but with the ones I do, Ican do with my eyes closed. I can’t cope with complicated...my brain gets too addled.
A few samples of my ‘wares’ 🙂
The weather is starting to perk up...spring is definitely in the air. Can’t believe we are in the middle of September already. This time last year we were organising my big girls 21st. Time goes so fast but I don’t want it to go too fast.
Sunday 16th September 2018 - 9.03am
Monday 27 August 2018
After infusion 27-08-18
I found todays infusion quite depressing. I don't know why. The nurses were busy, they couldn't find a vein and after about 30 mins or so they finally found one near the knuckle of my index finger. Bloody sore putting the damn needle in.
Think I felt a bit overwhelmed by how busy the nurses were and the realisation of how many of us have this stupid cancer.
And then I find out that not many turned up at a birthday dinner on Sat night that I was spose to go to but was just so tired and feeling oomph-less. I feel like I was being made to feel guilty but I can't think like that. I have to put myself first. At least I text the person to say I wasn't coming and then again today to apologise (before being guilted).
I openly admit I'm not too reliable right now...to attend anything. I just don't feel up to it...
But right at this moment am feeling quite flat. Just don't want to talk to anyone or listen to anyone. Perhaps an early night is called for.
Monday 27th August 2018 - 12.30pm
Thursday 23 August 2018
Unwritten law
Is there an unwritten law saying you can’t possibly have it too good for too long? It’s simply too much to ask for. I’ve been feeling so good lately, both in my head and with not having any pain, but suddenly the dreaded aches have come back. I was feeling a bit off on Monday night and when my alarm went off Tuesday morning, I just felt off. I was tired even though I’d had a decent nights sleep and my back and sides were aching like they haven’t in a long time, so needless to say I stayed home in bed all day. Two days later I am still feeling the aches but the good thing about taking 15 mg tablets of codeine is that I can play around with them, adding extra if needed. Today, a couple of times I popped 30mg and while it helped, it didn’t do the job completely. After dinner tonight, I decided to pop an extra one again, so took 45mg and I am feeling quite good. I’m not worried about upping the dose - at one stage I was taking 60mg a time, so 45mg should be good. My only concern if I need to take them tomorrow is the tiredness I will experience while I’m at work...not to mention back to taking laxsol to keep the bowels moving - ugh...hopefully they’ll disappear as quickly as they’ve arrived.
Life is plodding along as normal. Still waiting on a date for the article being published in the Womans Day magazine. The editor said she’ll give me a heads up. I’m hoping to get copies of the photos the photographer took of my wee girl and I - the ones we flicked through on his camera were beautiful. If I want to put any up on here or facebook, I have to pay for them so guess it comes down to how much it could cost per picture. It would be nice to share them...not every day you get your hair, make up and clothes done for you! The article has been done through Sweet Louise, and while its my story, it was really about putting a plug in for them. They are the only organisation who support those of us with metastatic breast cancer and naturally I had never heard of them before my journey...so I would love dearly to be able to get their name out there and become more known.
Life is very quiet at the moment...since coming back from Melbourne at the end of July, our older girl is still over there - looking at the job situation. I have been encouraging her to stay there, as she lives so quietly here, very much a home body and while there is nothing wrong with that, I am happy to see her outside her usual comfort zone. I kind of hope something comes up, even if only for a few months. And I know she’s safe with her aunty, uncle and cousins.
Our wee girl is almost never home and so it is just hubby and I. To be honest, I am enjoying it...I never thought I would say that! I don’t really know what it is, the girls were never noisy, they would always be in their rooms or out but I am revelling in the quiet. The one draw back is that I have to do my own food shopping and save it for the weekend as I am pretty hesitant about night driving during the winter time. I feel like I am an accident waiting to happen...its been coming on for a while. I’ll drive if I have to and only places I know well but I would prefer not to if at all possible. But even food shopping isn’t too much of a chore. I know I have to do it and so I set my mind to “cruise control” so I don’t ram anyone who gets in my way, I take a deep breath and wait if someone leaves their trolley in the middle of the aisle and so I’m not hyperventilating or in a rage as I am leaving...who ever knew I could keep my calm at the supermarket!!!! Wow, those happy pills are a miracle worker...
My crocheting of baby blankets continues. The damn wool is costing me a fortune and I need to cut it down due to a nice big credit card bill to pay off. I am a bit snobbish with my wool and have been buying it at Spotlight but need to source it elsewhere, cheaper. I am thinking about seeing if I can maybe sell some, not sure whether to do it on TradeMe or start up my own facebook page. I have had a bit of interest from people, so wonder if I can tap into that a little bit. Even if it was to just aid in the paying of more wool...or could I put that money aside and use it to fundraise for Sweet Louise...or maybe it could simply be a bit of pocket money to help out with stuff...I don’t know. I’d quite like to put a few ‘pretty’ blankets together so I could ‘advertise’ them for sale.
Life is plodding along as normal. Still waiting on a date for the article being published in the Womans Day magazine. The editor said she’ll give me a heads up. I’m hoping to get copies of the photos the photographer took of my wee girl and I - the ones we flicked through on his camera were beautiful. If I want to put any up on here or facebook, I have to pay for them so guess it comes down to how much it could cost per picture. It would be nice to share them...not every day you get your hair, make up and clothes done for you! The article has been done through Sweet Louise, and while its my story, it was really about putting a plug in for them. They are the only organisation who support those of us with metastatic breast cancer and naturally I had never heard of them before my journey...so I would love dearly to be able to get their name out there and become more known.
A selfie taken after our photo shoot for magazine article
Life is very quiet at the moment...since coming back from Melbourne at the end of July, our older girl is still over there - looking at the job situation. I have been encouraging her to stay there, as she lives so quietly here, very much a home body and while there is nothing wrong with that, I am happy to see her outside her usual comfort zone. I kind of hope something comes up, even if only for a few months. And I know she’s safe with her aunty, uncle and cousins.
The cat is making sure our big girls room isn’t left empty for too long...
My crocheting of baby blankets continues. The damn wool is costing me a fortune and I need to cut it down due to a nice big credit card bill to pay off. I am a bit snobbish with my wool and have been buying it at Spotlight but need to source it elsewhere, cheaper. I am thinking about seeing if I can maybe sell some, not sure whether to do it on TradeMe or start up my own facebook page. I have had a bit of interest from people, so wonder if I can tap into that a little bit. Even if it was to just aid in the paying of more wool...or could I put that money aside and use it to fundraise for Sweet Louise...or maybe it could simply be a bit of pocket money to help out with stuff...I don’t know. I’d quite like to put a few ‘pretty’ blankets together so I could ‘advertise’ them for sale.
A couple of my latest efforts
Even the cat likes them...she’s been itching to jump on each one but gets given the short shift
Since being home from Melbourne, I haven’t been terribly sociable - not for any other reason than I am just enjoying being at home by myself while hubby goes to darts in the weekend. And I don’t feel like it...am happy for others to pop over for a visit, I just don’t feel like going too far. And so in a nutshell, thats what I have been up to. My next treatment is this coming Monday. I went for my bloodtest yesterday, no bloodtest, no treatment as I discovered a few months ago. And so for now, I will continue to plod along, taking each day as it comes. Happy in the knowledge that I am ok with my own company...
Thursday 23rd August 2018 - 9.45pm
Monday 30 July 2018
Latest oncology appt - 30/07/18
Today was my first day back at work after having eight days annual leave - spent in Melbourne with close family. But today was also my next oncology appointment after three months. Who would I see today? Sometimes I strike gold and actually see Reuben whose team I am under but many times I see someone completely new. I get that there are a zillion cancer patients but it can get super frustrating not seeing the same person and being able to build a rapport with them. But anyhow after sitting and waiting in that awfully depressing room with everyone else, I was able to see Reuben Broom himself - eureka! Dr Broom is a consultant who specialises in breast & kidney cancer, and I feel relieved when I get to see him. I’m not saying the others don’t know what they’re talking about but he’s a pretty respected man of his field and I get a sense of relief when I get to see him.
Reuben was talking about changing my infusions from 4 weekly to 12 weekly. On one hand I was thinking, “yay awesome” and on the other I was thinking “eek, why change something that appears to be working - what if that sneaky ol’ cancer creeps in”. Crazy the thoughts that go through your head.
After questioning when I will next go for a bone scan (March 2017) or CT scan (Jan 2018), Reuben decided it could be advantageous for me to go for one before my next oncology appointment in October. Depending on how that went, he would probably then change my treatments to 12 weekly. Mainly because of the harshness zoladronic acid can have on your body, hence why I can never go to the dentist for a tooth extraction, as it can affect the healing of the jaw bone (vause complete breakdown of it) and can cause eye problems, which I really don’t need - I’ve already got huckery eyesight! But then after scanning my notes, he saw that my calcium levels had elevated last year after taking vitamin D meds prescribed by oncology and that apparently dashed his hopes of changing the time frame. I think too much calcium can have an adverse reaction against your bones and can cause fracturing, hence why they stopped me taking them. The zoladronic acid (zometa) strengthens the bones. But all in all, he is very happy with how this treatment is working. He is asking for a CT scan to be done the week after Labour weekend as I will go back to see him Monday 29th October and will get results then. He doesn’t expect anything to be found but they also told me they didn’t expect to find any secondaries in my MRI back in January 2016.
The difference between having a bone scan and a CT scan is that obviously the bone scan checks the bones only...a CT scan checks other stuff like your soft tissue...so fingers crossed no progression anywhere else. Although I have already been told, I did ask if I could continue on like this for years, and he said yes.
After which I then went down to acute oncology for my infusion where the nurses seemed busier than usual - a few issues occurring with other patients and their treatments, waiting for doctors etc...so after waiting 30 or so minutes, finally got my drip put in. No hand in hot water or anything- first pop with the needle- I was impressed! So thats done for another 28 days. Amazing how quickly the time goes. Back to work for a manic afternoon - felt like everyone wanted a piece of me...with a long list of stuff to do tomorrow but thats ok - it makes the day go fast. But it surely wasn’t smart thinking going to the hospital on my first day back at work...never mind, its done now.
I’m tired...must be time to crash out for the night. Pain relief is working really well, my back still aches at various times- Reuben checked it and is satisfied it isn’t caused by the cancer. My right shin bone is quite sore on a constant basis but once again he says it won’t be the cancer but caused by the exemestane - most of the time I walk with a limp - my days of wearing heels most definitely over! Happy pills still doing their job - all in all I am continuing to feel much better than previous months.
Monday 30th July 2018 - 10.57pm
Reuben was talking about changing my infusions from 4 weekly to 12 weekly. On one hand I was thinking, “yay awesome” and on the other I was thinking “eek, why change something that appears to be working - what if that sneaky ol’ cancer creeps in”. Crazy the thoughts that go through your head.
After questioning when I will next go for a bone scan (March 2017) or CT scan (Jan 2018), Reuben decided it could be advantageous for me to go for one before my next oncology appointment in October. Depending on how that went, he would probably then change my treatments to 12 weekly. Mainly because of the harshness zoladronic acid can have on your body, hence why I can never go to the dentist for a tooth extraction, as it can affect the healing of the jaw bone (vause complete breakdown of it) and can cause eye problems, which I really don’t need - I’ve already got huckery eyesight! But then after scanning my notes, he saw that my calcium levels had elevated last year after taking vitamin D meds prescribed by oncology and that apparently dashed his hopes of changing the time frame. I think too much calcium can have an adverse reaction against your bones and can cause fracturing, hence why they stopped me taking them. The zoladronic acid (zometa) strengthens the bones. But all in all, he is very happy with how this treatment is working. He is asking for a CT scan to be done the week after Labour weekend as I will go back to see him Monday 29th October and will get results then. He doesn’t expect anything to be found but they also told me they didn’t expect to find any secondaries in my MRI back in January 2016.
The difference between having a bone scan and a CT scan is that obviously the bone scan checks the bones only...a CT scan checks other stuff like your soft tissue...so fingers crossed no progression anywhere else. Although I have already been told, I did ask if I could continue on like this for years, and he said yes.
After which I then went down to acute oncology for my infusion where the nurses seemed busier than usual - a few issues occurring with other patients and their treatments, waiting for doctors etc...so after waiting 30 or so minutes, finally got my drip put in. No hand in hot water or anything- first pop with the needle- I was impressed! So thats done for another 28 days. Amazing how quickly the time goes. Back to work for a manic afternoon - felt like everyone wanted a piece of me...with a long list of stuff to do tomorrow but thats ok - it makes the day go fast. But it surely wasn’t smart thinking going to the hospital on my first day back at work...never mind, its done now.
I’m tired...must be time to crash out for the night. Pain relief is working really well, my back still aches at various times- Reuben checked it and is satisfied it isn’t caused by the cancer. My right shin bone is quite sore on a constant basis but once again he says it won’t be the cancer but caused by the exemestane - most of the time I walk with a limp - my days of wearing heels most definitely over! Happy pills still doing their job - all in all I am continuing to feel much better than previous months.
Monday 30th July 2018 - 10.57pm
Saturday 7 July 2018
A week in on new meds
What a difference a week can make. I started my new regime of slightly altered pain killers along with my ‘happy’ pills last weekend and what a complete change around. I set my phone alarm four hourly to ensure I take my pain killers. I even take spares with me along with a water bottle in case I am out and about when the next alarm goes off! I know its only been a week but if I can continue doing this, it will be so much better for me. The aches have pretty much subsided, apart from the mornings when I wake up but even then they’re slight compared to how they used to be. It makes such a difference. I wonder what took me so long to do something about it, but I just presumed it was something I had to deal with and wasn’t ready to try the big guns just yet. My mood is feeling so much better - I don’t know if the happy pills have kicked in or if its pyschological knowing I am taking them but either way, I don’t care. I’m not saying everything is back to normal but it is definitely much, much better.
On a slightly sourer note (sorry, can’t be completely happy happy), I am home on my own (wonderful). Girls are both working and hubby is at darts and so I have been using my quiet time to do the bloody housework. It appears I am the only person in this house who doesn’t like a dirty, bathroom or toilet and who can’t stand crap all over the carpet. I don’t know how many times I have expressed to my household how I am unable to do these things any more. Even if the pain is under control, I actually have cancer in my spine and so that nasty cancer stuff is looking for an ‘in’ to spread its nasty tentacles. I’m not saying by crounching down over the vacuum or shower, its going to make the cancer spread but surely it will have an effect on the quality of life or use I have of it (my spine my mean). Hence why I have the monthly zometa infusion - to strengthen my bones - to give them a much better chance of not fracturing or splintering. It will happen one day but we want to put that off as long as possible. Its just really disappointing that my family don’t do what they can to help, regularly. I’m not saying they don’t love me because of course I know they do. They just don’t think...they are so wrapped up in their own lives, doing their own thing. Mum looks ok, she’ll be fine. Even when this blasted cancer truly affects my movement, they’ll still be able to just get on and do stuff. While I’ll be trapped, feeling more useless than I do now. They simply don’t think...tell them you say...how many times do I have to tell them? I don’t think I ask a lot of them...more often than not I have been there for them. This is my time of need. I need them to pitch in and help now. I won’t need them when I’m dead. I won’t care how dirty the house is once I’m dead. They’ll cry and carry on when I’m gone but I need them now - while I’m alive. Don’t resent me because I need your help, embrace it and be thankful you can do something for me while I’m still alive. Your lives will go on, mine will be over and done with, no second chances I’m afraid. Remember those days when as well as working full time, I would come home and cook dinner, do the food shopping and all the housework and in between all that, run them around here and there. A little bit of giving back would be appreciated but I refuse to ask again. And to be honest my back is bloody sore now after all that bending over shower, toilet, vacuum...had to take a double dose of codeine.
At least I know its done now...I’ll settle down for a couple of hours before putting dinner on and enjoy the weekend. I’ve put the fire on already - my cousins have been giving us firewood which I am so grateful for. I’d been thinking about buying some which could cost between $300 / $400 depending on the mix you get and cubic meterage. I’ll just sit in the warmth and continue on with my crocheting...another sleep in tomorrow, bliss...
Saturday 7th July 2018 - 3.13pm
On a slightly sourer note (sorry, can’t be completely happy happy), I am home on my own (wonderful). Girls are both working and hubby is at darts and so I have been using my quiet time to do the bloody housework. It appears I am the only person in this house who doesn’t like a dirty, bathroom or toilet and who can’t stand crap all over the carpet. I don’t know how many times I have expressed to my household how I am unable to do these things any more. Even if the pain is under control, I actually have cancer in my spine and so that nasty cancer stuff is looking for an ‘in’ to spread its nasty tentacles. I’m not saying by crounching down over the vacuum or shower, its going to make the cancer spread but surely it will have an effect on the quality of life or use I have of it (my spine my mean). Hence why I have the monthly zometa infusion - to strengthen my bones - to give them a much better chance of not fracturing or splintering. It will happen one day but we want to put that off as long as possible. Its just really disappointing that my family don’t do what they can to help, regularly. I’m not saying they don’t love me because of course I know they do. They just don’t think...they are so wrapped up in their own lives, doing their own thing. Mum looks ok, she’ll be fine. Even when this blasted cancer truly affects my movement, they’ll still be able to just get on and do stuff. While I’ll be trapped, feeling more useless than I do now. They simply don’t think...tell them you say...how many times do I have to tell them? I don’t think I ask a lot of them...more often than not I have been there for them. This is my time of need. I need them to pitch in and help now. I won’t need them when I’m dead. I won’t care how dirty the house is once I’m dead. They’ll cry and carry on when I’m gone but I need them now - while I’m alive. Don’t resent me because I need your help, embrace it and be thankful you can do something for me while I’m still alive. Your lives will go on, mine will be over and done with, no second chances I’m afraid. Remember those days when as well as working full time, I would come home and cook dinner, do the food shopping and all the housework and in between all that, run them around here and there. A little bit of giving back would be appreciated but I refuse to ask again. And to be honest my back is bloody sore now after all that bending over shower, toilet, vacuum...had to take a double dose of codeine.
Sunday 1 July 2018
Progress...
Friday 29th June
Last Sunday night, the rain was pelting down and all I could think of was those who are homeless. While I was wrapped up warm, with the fire roaring, there were those poor souls out on the streets, hiding under bridges and door ways and it reminded me just how lucky I am. It doesn’t magically fix everything but in that moment, it reminded me of how much I have. And how silly to hold a grudge against my husband for a daft fight we had - what if one of us was to get hit by a car tomorrow, imagine the guilt or the regret we would feel. None of us live life perfectly - we all have our own way of handling things. Whose to say which is the right way and which is the wrong way...its simply a case of it being ‘our way’ at the time.
None of this takes away the sadness I feel having cancer and the effect it has had on me...it doesn’t stop the feelings of loneliness I experience. It doesn’t magically make me believe I am a fun person to be around or that I suddenly am able to cope with other peoples issues...But perhaps it was enough to start lifting that fog a wee bit. That coupled with a couple of friends making contact with me, expressing their concern after reading my previous post and taking the time to stop and talk to me and gently pass on their advice. And so after listening to what they had to say, I took myself off to see my GP yesterday to sort out pain meds to try and get on top of that a bit more, as well as get some anti-depressants aka happy pills. Unfortunately I wasn’t able to get to the chemist after work to get the script filled out due to my car breaking down and having to wait nearly two hours for a towie...so will start them both tomorrow morning. (can’t possibly have everything going smoothly, cos when we got home finally at 7.10pm, I was using the microwave and it blew up!)
Its now Sunday early morning. I fell asleep last night catching up here with glasses, ipad and bedroom light, all still on. I woke up to my big girl tucking her mummy in...cute.
Saturday morning I took my first happy pill...and started my new reigime of pain meds. Its not too much of a change - I am now trying 1 x 15mg codeine with 2 x paracetamol every 4 hours. I set my alarm 4 hourly today after my first ones, to make sure I take them regularly. This is often half my battle - I forget to take them and it isn’t until I get sore again that I remember and so its a matter of starting over. The GP and I discussed other options but I was happy to give this a try first. If it doesn’t work, I’ll go back but today I have felt good. No aches whatsoever and taking them regularly. My concern is always that I will be drowsy while both at work and whilst drivng, especially in peak hour traffic. I’ll see how it goes. When I say I am in a lot of pain, I don’t mean I am in excrutiating pain - its more of an ache than a pain. Sometimes they are worse than others, but they have always been pretty much constant especially after sitting for any length of time. But it feels good to know I have been to see someone about sorting these things out and it’s thanks to these ladies for being concerned and knowing I needed to be pro-active in asking for help...so thank you.
I have been contacted a number of times by those who regularly read this, when I have posted something that resonates in some way whether the contact is directly to me, or by leaving a comment here on the blog. Either which way, I just want to say thank you. I don’t post these things to get attention.
Its not easy allowing others to see your vulnerability. First & foremost, I write this blog for me. I need to be able to express my emotions and frustrations - its a release for me. Sometimes, I think twice whether to post something or not because I worry it may be too dark or depressing and people will get sick of reading it. But it would be a pity if I allowed that fear to stop me posting what I feel. People have the choice whether to read this or not - I don’t have a choice about having cancer and I have to be able to deal with it in the way I know how and that is right for me. Do I feel self conscious after I’ve written something deeply personal? Most definitely! For me being able to say that I felt a little depressed - that was huge for me but I needed to acknowledge it ‘out loud’ and not just keep it in my head.
Like anything in life, there is always the good and the bad. My feelings in this journey are no different. I hope these happy pills help my anxiety with dealing with situations outside of my comfort zone and the loneliness I have been feeling is resolved. I definitely look forward to feeling happier.
Thank you for listening and for all concern shown.
Last Sunday night, the rain was pelting down and all I could think of was those who are homeless. While I was wrapped up warm, with the fire roaring, there were those poor souls out on the streets, hiding under bridges and door ways and it reminded me just how lucky I am. It doesn’t magically fix everything but in that moment, it reminded me of how much I have. And how silly to hold a grudge against my husband for a daft fight we had - what if one of us was to get hit by a car tomorrow, imagine the guilt or the regret we would feel. None of us live life perfectly - we all have our own way of handling things. Whose to say which is the right way and which is the wrong way...its simply a case of it being ‘our way’ at the time.
None of this takes away the sadness I feel having cancer and the effect it has had on me...it doesn’t stop the feelings of loneliness I experience. It doesn’t magically make me believe I am a fun person to be around or that I suddenly am able to cope with other peoples issues...But perhaps it was enough to start lifting that fog a wee bit. That coupled with a couple of friends making contact with me, expressing their concern after reading my previous post and taking the time to stop and talk to me and gently pass on their advice. And so after listening to what they had to say, I took myself off to see my GP yesterday to sort out pain meds to try and get on top of that a bit more, as well as get some anti-depressants aka happy pills. Unfortunately I wasn’t able to get to the chemist after work to get the script filled out due to my car breaking down and having to wait nearly two hours for a towie...so will start them both tomorrow morning. (can’t possibly have everything going smoothly, cos when we got home finally at 7.10pm, I was using the microwave and it blew up!)
Its now Sunday early morning. I fell asleep last night catching up here with glasses, ipad and bedroom light, all still on. I woke up to my big girl tucking her mummy in...cute.
Saturday morning I took my first happy pill...and started my new reigime of pain meds. Its not too much of a change - I am now trying 1 x 15mg codeine with 2 x paracetamol every 4 hours. I set my alarm 4 hourly today after my first ones, to make sure I take them regularly. This is often half my battle - I forget to take them and it isn’t until I get sore again that I remember and so its a matter of starting over. The GP and I discussed other options but I was happy to give this a try first. If it doesn’t work, I’ll go back but today I have felt good. No aches whatsoever and taking them regularly. My concern is always that I will be drowsy while both at work and whilst drivng, especially in peak hour traffic. I’ll see how it goes. When I say I am in a lot of pain, I don’t mean I am in excrutiating pain - its more of an ache than a pain. Sometimes they are worse than others, but they have always been pretty much constant especially after sitting for any length of time. But it feels good to know I have been to see someone about sorting these things out and it’s thanks to these ladies for being concerned and knowing I needed to be pro-active in asking for help...so thank you.
I have been contacted a number of times by those who regularly read this, when I have posted something that resonates in some way whether the contact is directly to me, or by leaving a comment here on the blog. Either which way, I just want to say thank you. I don’t post these things to get attention.
Its not easy allowing others to see your vulnerability. First & foremost, I write this blog for me. I need to be able to express my emotions and frustrations - its a release for me. Sometimes, I think twice whether to post something or not because I worry it may be too dark or depressing and people will get sick of reading it. But it would be a pity if I allowed that fear to stop me posting what I feel. People have the choice whether to read this or not - I don’t have a choice about having cancer and I have to be able to deal with it in the way I know how and that is right for me. Do I feel self conscious after I’ve written something deeply personal? Most definitely! For me being able to say that I felt a little depressed - that was huge for me but I needed to acknowledge it ‘out loud’ and not just keep it in my head.
Like anything in life, there is always the good and the bad. My feelings in this journey are no different. I hope these happy pills help my anxiety with dealing with situations outside of my comfort zone and the loneliness I have been feeling is resolved. I definitely look forward to feeling happier.
Thank you for listening and for all concern shown.
‘Wig Wednesday’ - raising funds for child cancer
Sunday 1st July 2018 - 2.20am
Monday 18 June 2018
Who am I
I look in the mirror and I don’t recognise myself. I feel like I have completely disappeared and I don’t really know what to do to bring myself back again. I’m unhappy and I’m lonely. I’m not in a good space right now so I suggest if your not up for reading something on the ‘dark’ side, you may as well sign off right now. I have felt really unhappy for months now, I think it just slowly crept its way in without me really realising. My moods swing from feeling like I can’t handle talking to anyone and I want to curl up into a tight ball where no one can see me, to fits of rage where I want to scream at people. Sometimes I want to scream ‘look at me...see me...help me...talk to me, have time for me’ but I don’t and no one does...and the feelings of sadness, anger, loneliness and unhappiness intensifies.
God, why do I feel like this? Where has it come from? I don’t really know...I know that I am so over the aches and pains I feel...every goddam day. When I sleep and go to turn over in my sleep, I hurt...when I get out of bed, it hurts...when I walk, it hurts...when I sit for a period of time and I have to get up, it hurts. I’m aick of having to take pain killers constantly and then I forget to top the damn things up and so the pain creeps back in again but I don’t really realise it until it hits me with a bang, and then I have to start all over again. And so with decent pain killers, you become constipated - that is god awful. I could always ask the oncologist to change my meds but I don’t want to cut my options down before I have to and how do we know the others won’t have the same side effects.
I have no confidence...I shy away from situations that are outside of my comfort zone...I simply don’t want to talk to anyone...I don’t have the energy to be concerned for anyone else. It doesn’t stop me from thinking about people and worry about how they are, but it stops me from taking it any further and actually contacting them - I am simply incapable of it. I don’t want to talk to people about how I am feeling...
Sometimes all I want to do is cry...and sometimes I do. Last weekend, I was extremely tearful - hubby and I had a huge fight. He thought I was mad at him, but I wasn’t, simply just sad and lost. I don’t have it in me to make it up with him...he doesn’t understand... no one does. Its not even the thought of this bullshit disease killing me one day...its simply the pain and the impact it has had on me. I am so sick of being brave and strong...none of that was a bullshit bravado act, which I’m sure people will say it was, because they know much better than me, how I feel or have felt...but its like a switch has gone off inside my head and I am losing my way...
Even now as I type this, a part of me wants to break down and sob my heart out, but this tough exterior won’t allow me to. I hold it all in until I can hold it no more and it spews out in whatever form manifests at that time.
I think I am mildly depressed...I don’t have anything in the tank right now to get help. I don’t want to go to counselling, I don’t feel like talking. I don’t want to get anti-depressants, not because I don’t believe in them because I do - I just don’t want to add to the reigime of tablets I take at the moment. This one counteracts against that one, and this one affects your blood pressure and so on...I hope I’ll just come right on my own. I do wonder though, what kind of life is this...I work all week and then stay home and crochet my baby blankets. Such a sad, pathetic life. Is this even a life? In all honesty, what is the point? I don’t want to die, of course I don’t but is there more than just going through the motions and working to pay the bills for everyone elses security?
How I desperately hate having cancer...
Monday 18th June 2018 - 11.15pm
God, why do I feel like this? Where has it come from? I don’t really know...I know that I am so over the aches and pains I feel...every goddam day. When I sleep and go to turn over in my sleep, I hurt...when I get out of bed, it hurts...when I walk, it hurts...when I sit for a period of time and I have to get up, it hurts. I’m aick of having to take pain killers constantly and then I forget to top the damn things up and so the pain creeps back in again but I don’t really realise it until it hits me with a bang, and then I have to start all over again. And so with decent pain killers, you become constipated - that is god awful. I could always ask the oncologist to change my meds but I don’t want to cut my options down before I have to and how do we know the others won’t have the same side effects.
I have no confidence...I shy away from situations that are outside of my comfort zone...I simply don’t want to talk to anyone...I don’t have the energy to be concerned for anyone else. It doesn’t stop me from thinking about people and worry about how they are, but it stops me from taking it any further and actually contacting them - I am simply incapable of it. I don’t want to talk to people about how I am feeling...
Sometimes all I want to do is cry...and sometimes I do. Last weekend, I was extremely tearful - hubby and I had a huge fight. He thought I was mad at him, but I wasn’t, simply just sad and lost. I don’t have it in me to make it up with him...he doesn’t understand... no one does. Its not even the thought of this bullshit disease killing me one day...its simply the pain and the impact it has had on me. I am so sick of being brave and strong...none of that was a bullshit bravado act, which I’m sure people will say it was, because they know much better than me, how I feel or have felt...but its like a switch has gone off inside my head and I am losing my way...
Even now as I type this, a part of me wants to break down and sob my heart out, but this tough exterior won’t allow me to. I hold it all in until I can hold it no more and it spews out in whatever form manifests at that time.
I think I am mildly depressed...I don’t have anything in the tank right now to get help. I don’t want to go to counselling, I don’t feel like talking. I don’t want to get anti-depressants, not because I don’t believe in them because I do - I just don’t want to add to the reigime of tablets I take at the moment. This one counteracts against that one, and this one affects your blood pressure and so on...I hope I’ll just come right on my own. I do wonder though, what kind of life is this...I work all week and then stay home and crochet my baby blankets. Such a sad, pathetic life. Is this even a life? In all honesty, what is the point? I don’t want to die, of course I don’t but is there more than just going through the motions and working to pay the bills for everyone elses security?
How I desperately hate having cancer...
Monday 18th June 2018 - 11.15pm
Monday 14 May 2018
Anger & hatred - strong emotions
Its after midnight, which means mothers day is over for another year.. I was surprised by my babies with a gift, which I had told them not to buy and then the girls took me out for lunch - which was just lovely. All cafes were packed (of course) but it was enjoyable sitting and chatting and having a catch up. We have felt very divided lately, all going in separate directions so was definitely great having that time together.
I have been finding lately I don’t find much pleasure in anything really these days. My heart feels full of anger and hatred and I don’t know how to deal with it. I don’t want to talk to anyone, I don’t feel close enough to anyone to talk to. I feel closed off from everyone, except for hubby and my three babies but I don’t want to talk to them either. I feel like the cancer has spread into my heart...and I’m worried that by feeling like this, it will literally spread everywhere and like wild fire.
I have zilch tolerance, I don’t feel happy for anyone, I have no enthusiasm for anyone or anything. I just know I am consumed by anger and hatred...and I don’t know how to relieve myself of it. I struggle on a daily basis conversing with people - I try but my heart is just not in it. I don’t have it in me to spend time with anyone or go anywhere - this stretches to places as simple as the gas station to fill the car up, except I know I have to do it otherwise I can’t go to work. Work is about the only thing that has a hold of me but without that, I don’t get any money and then I can’t pay my bills. But even there I struggle daily to cope. I want to scream at everyone to shut the fuck up, and slam the door to our office to block out the noise.
I am in pain every day and although I try to keep up with my pain meds every four hours, I forget or like today, I didn’t take any with me and so by the time we got home this afternoon, I was so tired and sore. I hate this stupid cancer...I hate what it does to me and I don’t know what to do. I am sick of being good natured and having a great attitude. I am sick of being grateful for small mercies. I hate everything...I hate this stupid life...but its all I have.
I just put my name down tonight to volunteer for Daffodil Day in August...why did I even do that? Cos I just can’t bloody help myself! I have to do the right bloody thing and ‘give back’. What a load of fucking bollocks...give back to what???? Give back because I received help after being diagnosed with this stupid cancer? OMG, I am an idiot...I am a hateful, angry, bitter and twisted cancerous old bitch... and I just fucking hate life at the moment.
Monday 14th May 2018 - 12.49am
I have been finding lately I don’t find much pleasure in anything really these days. My heart feels full of anger and hatred and I don’t know how to deal with it. I don’t want to talk to anyone, I don’t feel close enough to anyone to talk to. I feel closed off from everyone, except for hubby and my three babies but I don’t want to talk to them either. I feel like the cancer has spread into my heart...and I’m worried that by feeling like this, it will literally spread everywhere and like wild fire.
I have zilch tolerance, I don’t feel happy for anyone, I have no enthusiasm for anyone or anything. I just know I am consumed by anger and hatred...and I don’t know how to relieve myself of it. I struggle on a daily basis conversing with people - I try but my heart is just not in it. I don’t have it in me to spend time with anyone or go anywhere - this stretches to places as simple as the gas station to fill the car up, except I know I have to do it otherwise I can’t go to work. Work is about the only thing that has a hold of me but without that, I don’t get any money and then I can’t pay my bills. But even there I struggle daily to cope. I want to scream at everyone to shut the fuck up, and slam the door to our office to block out the noise.
I am in pain every day and although I try to keep up with my pain meds every four hours, I forget or like today, I didn’t take any with me and so by the time we got home this afternoon, I was so tired and sore. I hate this stupid cancer...I hate what it does to me and I don’t know what to do. I am sick of being good natured and having a great attitude. I am sick of being grateful for small mercies. I hate everything...I hate this stupid life...but its all I have.
I just put my name down tonight to volunteer for Daffodil Day in August...why did I even do that? Cos I just can’t bloody help myself! I have to do the right bloody thing and ‘give back’. What a load of fucking bollocks...give back to what???? Give back because I received help after being diagnosed with this stupid cancer? OMG, I am an idiot...I am a hateful, angry, bitter and twisted cancerous old bitch... and I just fucking hate life at the moment.
Monday 14th May 2018 - 12.49am
Tuesday 1 May 2018
What a shit day
oh my giddy aunt, I just re-read my post from this morning. Full of mistakes - words without spaces, incorrect spelling - ugh. I usually try to proof read before posting but something always slips through. And often when I hit the space bar its like I haven’t even touched it. But enough...
Rough day today...no reason in particular - well actually thats not quite true. Got shit going on in my head but unable to express it to anyone. Coupled with a lack of sleep, and a menopausal mood, its not a happy one thats for shit sure.
Why does life have to be so hard and so complicated? Why do humans have to be so complex? Why do we have to ‘love’ people...it would be so much easier if we didn’t. I saw a picture on facebook this morning of my mum and her best friend, who was without a doubt one of my other favourite people. Lots of memories and emotions came flooding back and I felt like breaking down and crying. I’ve been thinking about mum a bit lately and I guess with Anzac Day last week, thinking about dad who fought in WWII - I have felt their loss considerably. I get sick of being the strong person all the time...just because I am a mum doesn’t mean I have all the answers and it doesn’t mean I don’t need to lean on someone sometimes. I’m going through a real hate cancer stage at the moment. I know how lucky I am to be as well as I am but I am just sick of it....I am sick of taking it like a trooper...sick of being happy and positive...I am sick of working full time...sick of being responsible for the bills...sick of being the one to sort everything out...sick of being treated at work by the young people like I don’t matter...just absolutely fucking sick of everything...
I have no enthusiasm for anything right at this moment...
Whats that old saying...”lifes a bitch and then you die”
Tuesday 1st May - 7.24pm
Rough day today...no reason in particular - well actually thats not quite true. Got shit going on in my head but unable to express it to anyone. Coupled with a lack of sleep, and a menopausal mood, its not a happy one thats for shit sure.
Why does life have to be so hard and so complicated? Why do humans have to be so complex? Why do we have to ‘love’ people...it would be so much easier if we didn’t. I saw a picture on facebook this morning of my mum and her best friend, who was without a doubt one of my other favourite people. Lots of memories and emotions came flooding back and I felt like breaking down and crying. I’ve been thinking about mum a bit lately and I guess with Anzac Day last week, thinking about dad who fought in WWII - I have felt their loss considerably. I get sick of being the strong person all the time...just because I am a mum doesn’t mean I have all the answers and it doesn’t mean I don’t need to lean on someone sometimes. I’m going through a real hate cancer stage at the moment. I know how lucky I am to be as well as I am but I am just sick of it....I am sick of taking it like a trooper...sick of being happy and positive...I am sick of working full time...sick of being responsible for the bills...sick of being the one to sort everything out...sick of being treated at work by the young people like I don’t matter...just absolutely fucking sick of everything...
I have no enthusiasm for anything right at this moment...
Whats that old saying...”lifes a bitch and then you die”
Tuesday 1st May - 7.24pm
No treatment this time
I am wide awake...been trying to go back to sleep since about 3.00am. Thats what happens when you try to go to sleep atan earlier time...what a bloody waste of time. Whats the lesser of the two evils? Going to sleep late and fighting with yourself when its time to get up? Or going to sleep early, wake up hours earlier and I presume feel buggered earlier while at work - guess I’ll find out soon enough.
Went for my oncology appointment yesterday to be followed with my treatment. Only thing is, I forgot to go for my blood test last week - what an idiot! First time in almost wo years I have done that...or not done that as the case may be in this instance and so they didn’t want to go ahead without seeing bloods. Plus I happened to mention that my teeth are a bit sensitive when I have a hot drink, so strike two.......I now have to be referred to Greenlane Hospital to get my teeth checked out, so no more treatment until that gets done. The oncologist hopes I should be seen before my next treatment is due in 28 fays. What a colossal screw up.
Life is ticking along...I am still following my keto ‘diet’. Not too much difference happening on the scales but have lots inches. I have gone down a dress size...brought a couple of tops the other night, in a smaller size and the lady in the chemist asked how it was going and commented on the weightloss in my face and top half, so that was great to hear. Because the scales aren’t shifting too much, sometimes I get a bit frustrated and fed up although I know the ‘science’ behind it. My taste buds havedefinitely changed. I had some 70% cocoa chocolate the other day and previously when I had tried ot, I thoight it was pretty disgusting. Now I am finding it quite sweet and an enjoyable treat. I don’t drink tea any more, not even with cream...its now sugarless coffee with cream...and herbal teas. Who am I? And what has happened to the real Tania????
I have found myself a wee hobby and one I am enjoying it immensely. My cousin when she saw a big blanket I was crocheting, happened to mention that maybe I should do babies ones and donate to people in need. That idea immediately got my attention and so I started basically the next day. I put a call out on facebook askng if anyone had any spare wool sitting in their cupboards and I have had so much given to me...its awesome! A couple of the ladies at work went and brought me some, they were so impressed by this idea and lots of people sharing what they had at home - time and time again I am humbled by the kindness of people. People who I don’t know, are gifting me some of their wares - its quite hard to put imto words how it makes you feel. I am now on my 8th blanket...I want to go out in the weekend and get some knitting needles. I was thinking I might make some bootees as well if I can find a nice simple yet cute pattern. And then once I have a wee stash, will find somewhere to donate them to. I feel like I am doing something worthwhile...it keeps me busy and I can do it in the comfort of my own home whenever I feel like it. I had been wondering whether to do volunteer work but was reluctant to commit myself for various reasons. This is perfect...and I can keep doing it as long as I have wool (and I have a nice wee stash).
Winter is creeping up towards us and with that, the aches are making themselves felt again. It was a wonderful reprieve over summer without them but as with everything in life, nothing goood or worthwhile sticks around forever. To be honest they have been quite horrendous and I have been trying my best to not take anything for them, but its pointless because the time comes where the pain gets out of control and hits you with a bang! Also because it had been a four month nreak between oncology appointments, I was running super low on pain killers, my usual ones, not the stronger ones. I had rung my GP to get a script of all mt tablets and she didn’t give me any bloody paracodeine!!! But I made it through ok...and the oncologist has given me a shitload - in fact I cracked up when the lovely man at the chemist handed them over! They look like a box of tissues! Usually I getso,ething like 200, think this time I got something like 700! Should keep me going for a wee while then...
Oops alarm has just gone off...guess that means another day is due to begin. Wonder what it will bring...
Tuesday 1st May 2018 - 5.39am
Went for my oncology appointment yesterday to be followed with my treatment. Only thing is, I forgot to go for my blood test last week - what an idiot! First time in almost wo years I have done that...or not done that as the case may be in this instance and so they didn’t want to go ahead without seeing bloods. Plus I happened to mention that my teeth are a bit sensitive when I have a hot drink, so strike two.......I now have to be referred to Greenlane Hospital to get my teeth checked out, so no more treatment until that gets done. The oncologist hopes I should be seen before my next treatment is due in 28 fays. What a colossal screw up.
Life is ticking along...I am still following my keto ‘diet’. Not too much difference happening on the scales but have lots inches. I have gone down a dress size...brought a couple of tops the other night, in a smaller size and the lady in the chemist asked how it was going and commented on the weightloss in my face and top half, so that was great to hear. Because the scales aren’t shifting too much, sometimes I get a bit frustrated and fed up although I know the ‘science’ behind it. My taste buds havedefinitely changed. I had some 70% cocoa chocolate the other day and previously when I had tried ot, I thoight it was pretty disgusting. Now I am finding it quite sweet and an enjoyable treat. I don’t drink tea any more, not even with cream...its now sugarless coffee with cream...and herbal teas. Who am I? And what has happened to the real Tania????
I have found myself a wee hobby and one I am enjoying it immensely. My cousin when she saw a big blanket I was crocheting, happened to mention that maybe I should do babies ones and donate to people in need. That idea immediately got my attention and so I started basically the next day. I put a call out on facebook askng if anyone had any spare wool sitting in their cupboards and I have had so much given to me...its awesome! A couple of the ladies at work went and brought me some, they were so impressed by this idea and lots of people sharing what they had at home - time and time again I am humbled by the kindness of people. People who I don’t know, are gifting me some of their wares - its quite hard to put imto words how it makes you feel. I am now on my 8th blanket...I want to go out in the weekend and get some knitting needles. I was thinking I might make some bootees as well if I can find a nice simple yet cute pattern. And then once I have a wee stash, will find somewhere to donate them to. I feel like I am doing something worthwhile...it keeps me busy and I can do it in the comfort of my own home whenever I feel like it. I had been wondering whether to do volunteer work but was reluctant to commit myself for various reasons. This is perfect...and I can keep doing it as long as I have wool (and I have a nice wee stash).
Oops alarm has just gone off...guess that means another day is due to begin. Wonder what it will bring...
Tuesday 1st May 2018 - 5.39am
Sunday 8 April 2018
Should I ? Shouldn’t I?
I’m wondering if I should start a second blog with the aim of perhaps not even opening it up for others to read and to use it purely as an online diary for myself... For the last month or so I have been experimenting with firstly the ‘low carb, high fat’ (LCHF) eating regime. I started it because I was starting to put on a few kilo’s and when trying to go back to limiting myself to eating protein, salads and healthy snacks, found I was hungry all the time. My nutritionist had previously encouraged me to try the LCHF thing but I couldn’t commit to giving up spuds, rice, bread, pasta and the like. But I knew that fat keeps you fuller for longer so I decided to give it a whirl again and to commit to giving up those un-necessary carbs. What I didn’t realise is how many carbs there are in fruit and vegetables so even trying to keep those down has been a real education.
The LCHF thing has moved on to what they call a ‘keto’ way of life. It can be quite confusing...but it has completely changed the way I eat. I am definitely fuller, don’t snack like I used to, my sugar cravings have stopped - except when in Opotiki and saw some lovely homebaking and thought stuff it, I have to try it! (and I don’t regret it for a moment). So basically you keep carbs down to a minimum, moderate protein and have lots of good, natural fats i.e. cook veges in butter, have full cream in tea & coffee, eat bacon, salami, brie cheese and so on. Its a real learning curve and continues to be. Your body goes into a state of ketosis which I think means your existing fat is used to burn up for energy instead of the carbs you consume. One thing I have learnt but continue to struggle with is that scales are not your friend...and while I have lost maybe 3.5 kilos, my clothes are feeling looser. You have to drink a shitload of water and I mean a shitload...so that replaces the fat burning up into energy, therefore playing with the numbers on the scales. I don’t know that I have the formula completely right yet, its a huge learning curve but am on the right track and not regretting the decision by any means. I think the whole cancer / sugar thing is a valid enough reason to give it a try. I don’t miss eating spuds or bread or any of that stuff. I even made my own ‘keto’ bread yesterday using almond meal and psyllium (had never heard of them before) but almond meal and almond flour is made from grounded up almonds. I can’t even use flour to thicken my gravies so they are now ‘jus’. My keto bread even tasted quite nice...quite happy for first go. It was more a case of giving it a try and not so much as replacing ‘normal’ bread.
So this is my dilema, should I start a new blog where I can keep notes on what I am doing, how I am going. Add pics of myself to see if there are any noticable changes etc etc. I felt like I had really achieved something yesterday from making this bread plus also purchasing other ‘keto’ items. Guess I can always delete it if I change my mind...
Ok - change of subject...we raised $1124.00 in the Easter raffles at work and presented a cheque to one of the Sweet Louise ladies on Friday. She came into work and we took photo’s to go on our facebook page and they will go on Sweet Louise’s facebook page too. It felt great giving back!
Sweet Louise are interested in using my story for one of their newsletters. The need to educate others on the dangers of breast cancer and the importance of self examination is still a burning desire within me...I just don’t know how to do it but will continue as I am. I hope that by being so open, it gives people something to think about.
Another week starts tomorrow...a full one after two short ones before and after Easter...that’ll be interesting.
Sunday 8th April 2018 - 8.23pm
The LCHF thing has moved on to what they call a ‘keto’ way of life. It can be quite confusing...but it has completely changed the way I eat. I am definitely fuller, don’t snack like I used to, my sugar cravings have stopped - except when in Opotiki and saw some lovely homebaking and thought stuff it, I have to try it! (and I don’t regret it for a moment). So basically you keep carbs down to a minimum, moderate protein and have lots of good, natural fats i.e. cook veges in butter, have full cream in tea & coffee, eat bacon, salami, brie cheese and so on. Its a real learning curve and continues to be. Your body goes into a state of ketosis which I think means your existing fat is used to burn up for energy instead of the carbs you consume. One thing I have learnt but continue to struggle with is that scales are not your friend...and while I have lost maybe 3.5 kilos, my clothes are feeling looser. You have to drink a shitload of water and I mean a shitload...so that replaces the fat burning up into energy, therefore playing with the numbers on the scales. I don’t know that I have the formula completely right yet, its a huge learning curve but am on the right track and not regretting the decision by any means. I think the whole cancer / sugar thing is a valid enough reason to give it a try. I don’t miss eating spuds or bread or any of that stuff. I even made my own ‘keto’ bread yesterday using almond meal and psyllium (had never heard of them before) but almond meal and almond flour is made from grounded up almonds. I can’t even use flour to thicken my gravies so they are now ‘jus’. My keto bread even tasted quite nice...quite happy for first go. It was more a case of giving it a try and not so much as replacing ‘normal’ bread.
So this is my dilema, should I start a new blog where I can keep notes on what I am doing, how I am going. Add pics of myself to see if there are any noticable changes etc etc. I felt like I had really achieved something yesterday from making this bread plus also purchasing other ‘keto’ items. Guess I can always delete it if I change my mind...
Ok - change of subject...we raised $1124.00 in the Easter raffles at work and presented a cheque to one of the Sweet Louise ladies on Friday. She came into work and we took photo’s to go on our facebook page and they will go on Sweet Louise’s facebook page too. It felt great giving back!
Another week starts tomorrow...a full one after two short ones before and after Easter...that’ll be interesting.
Sunday 8th April 2018 - 8.23pm
Sunday 25 March 2018
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.
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
Saturday 24 March 2018
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.
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
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!
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.
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
Tuesday 13 March 2018
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.
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
Sunday 11 March 2018
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
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.
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
Sunday 25 February 2018
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
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.
Sunday 25th February 2018 - 8.02am
Saturday 3 February 2018
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
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
Monday 22 January 2018
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
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
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