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
Monday 22 January 2018
Wednesday 17 January 2018
sleepless night
Ugh...after my big sleep yesterday afternoon, for the life of me, I could not go to sleep last night. 2.00 am I was still awake but I also had to give in and get up to take some painkillers. The aches have been a bit worse over the last few days and I was hoping to make it through the night without having to go over the daily limit. It happens when I take my first lot too early in the morning - puts me out of sync for the rest of the day.
I’ve decided not to go to work today. I’ve probably only had a couple of hours sleep and if I go, it will only end up with me being tired and needing to come home early and I dread the thought to be honest. Like a piece of concrete is sitting in my gut. My aches are quite excessive this morning too. Possibly exasperated by the tiredness? I don’t really know...My feet are throbbing and my back is aching - bloody hell.
Its really hard to not hate yourself when your feeling like this but you have to put it into perspective. When you think of what other people are going through, is this really that bad? Its mighty frustrating I know that. But it could be so much worse...and I am so, so glad and grateful that it isn’t.
A rest day today and back to work tomorrow feeling normal again. There’s definitely something to be said for feeling ‘normal’. In my case its more a feeling of having rested well with a few aches thrown in. But god, the feeling of having had a good sleep is simply wonderful...
I look forward to tomorrow...waking up well rested and ready to take on the world again. For now I’ll just blob and take it easy
Wednesday 17th January 2018 - 8.28am
I’ve decided not to go to work today. I’ve probably only had a couple of hours sleep and if I go, it will only end up with me being tired and needing to come home early and I dread the thought to be honest. Like a piece of concrete is sitting in my gut. My aches are quite excessive this morning too. Possibly exasperated by the tiredness? I don’t really know...My feet are throbbing and my back is aching - bloody hell.
Its really hard to not hate yourself when your feeling like this but you have to put it into perspective. When you think of what other people are going through, is this really that bad? Its mighty frustrating I know that. But it could be so much worse...and I am so, so glad and grateful that it isn’t.
A rest day today and back to work tomorrow feeling normal again. There’s definitely something to be said for feeling ‘normal’. In my case its more a feeling of having rested well with a few aches thrown in. But god, the feeling of having had a good sleep is simply wonderful...
I look forward to tomorrow...waking up well rested and ready to take on the world again. For now I’ll just blob and take it easy
Wednesday 17th January 2018 - 8.28am
Tuesday 16 January 2018
how a day can change
How can one day go from one extreme to another? I guess much the same as how Auckland weather can have four seasons in one day.
I was so tired this morning (just for a change), I contemplated staying home but you know me...I just can’t do it. Being tired and suffering from more achiness than usual isn’t quite enough to make me stay home. And all I could think about was this project I have been given to complete by a certain date and so far had only been able to fit it in here and there due to my work load. So my vision for the day was to crack into it and so I did...I was suitably impressed with myself, haven’t finishd it by any means but have definitely put a big dent in it. I was so damn proud of myself! And then all of a sudden the tireness overwhelms me. I try walking around, make myself a cuppa but nothing is working. By 3.30pm, I come to the realisation nothing is going to work and I may as well go home and get some rest and save work having to pay for my non-productivity. Its quite scary feeling that level of tiredness especially when you are in charge of a moving vehicle. I had at least three times where I felt so drowsy I almost closed my eyes while driving. Such relief to get home...crashed out to sleep for two hours, now not feeling like I can drop off to sleep any time soon...and so the cycle continues...will just have to make sure I rest tomorrow after work and hopefully get an early-ish sleep.
Wonder what it is that makes you so weary when you have any kind of ‘condition’. I guess your body is trying to still run at full capacity even though it doesn’t completely have the capability and so your juice runs out at a faster rate. Its bloody frustrating. No matter how many times I say this is my new normal and I just have to get used to it, it is very frustrating. I can’t help but have a chuckle at myself sometimes, as I try to get up ‘quickly’ in an ad break of a program to make a cuppa or go bathroom. There is no moving quickly for me anymore. And then when I do get up, I hobble like a, I don’t even know what...my supervisor sent me a message this afternoon asking if I could go see him quickly. I laughed to myself...and as he saw me hobbling towards his office, he asked whats wrong...I cracked up and told him ‘no quickly for me anymore’. He had a wee laugh too...
Hubby came home from his holiday with my cousins on Saturday. He had a blast and brought some fish home where he proceeded to divvy it up amongst people. It was his choice who he gave it to, and I was really impressed. I thought he was very kind. We ended up having an impromptu gathering which was really lovely. Hubbys brother had come up, the three of us had a few drinks and then the babies all came home with a couple of our friends in tow...so out came the darts. So even though it was a 2.00am bedtime for me, it was actually a really chilled out weekend - perfect!
My trip to Melbourne to stay with my other sister is looming up very quickly. Can’t wait to spend some time with her. We’ve never really spent a lot of time together but this journey seems to have brought us closer. I have often talked about those whom I feel should know better yet avoid contact with me. Yet this sister, even though we hadn’t been in too much contact, took it upon herself to ring me when she found out about my diagnosis and has kept in touch, and when she heard I was going over last year, was determined to be there to see me. That is pure gold...you don’t forget things like that. That is what is important to me now. “People” - actions speak louder than words for sure. They don’t have to be big sweeping gestures, simply making it known that I am thought of. The only thing wrong with that saying though is that it doesn’t apply to me too much these days. My heart means well and my head tells me I want to do something for someone...but my body tells a completely different story and doesn’t seem capable of carrying anything through. Since the lovely long weekends, I feel like I have been avoiding talking to anyone and I feel a bit guilty. I think I wrote about it in an earlier post, but I just don’t feel like ringing anyone, or messaging or emailing anyone yet I don’t know why...I’m not depressed, in fact I am loving the summer, I’m not pissed off at anyone (that can change in a heartbeat!) - weird. Consumed with myself? Probably...
My facebook page is still deactivated and I don’t miss it one iota! Sometimes I feel a bit cut off and I don’t take many pics now cos no fb to put them on...and I don’t post on here everytime I take another photo...but its ok, I can cope with that feeling. Sometimes I think about doing an online dairy...more about what I do each day, or how each day has gone, more than about keeping people up to date with the cancer thing...I could put pics on that...I don’t know...just rambling now. Its after 11.30pm now, I should really be trying to settle down to get a bit of shut eye. The wind is blowing quite fiercely, its too hot to shut both windows so the open one is rattling the curtain hooks with the curtain blowing about, quietly driving me nuts. To shut it or keep it open? Such a tough decision to make at this time of the night...
Tuesday 16th January 2017 - 11.40pm
Middle of the first month already...cripes xx
I was so tired this morning (just for a change), I contemplated staying home but you know me...I just can’t do it. Being tired and suffering from more achiness than usual isn’t quite enough to make me stay home. And all I could think about was this project I have been given to complete by a certain date and so far had only been able to fit it in here and there due to my work load. So my vision for the day was to crack into it and so I did...I was suitably impressed with myself, haven’t finishd it by any means but have definitely put a big dent in it. I was so damn proud of myself! And then all of a sudden the tireness overwhelms me. I try walking around, make myself a cuppa but nothing is working. By 3.30pm, I come to the realisation nothing is going to work and I may as well go home and get some rest and save work having to pay for my non-productivity. Its quite scary feeling that level of tiredness especially when you are in charge of a moving vehicle. I had at least three times where I felt so drowsy I almost closed my eyes while driving. Such relief to get home...crashed out to sleep for two hours, now not feeling like I can drop off to sleep any time soon...and so the cycle continues...will just have to make sure I rest tomorrow after work and hopefully get an early-ish sleep.
Wonder what it is that makes you so weary when you have any kind of ‘condition’. I guess your body is trying to still run at full capacity even though it doesn’t completely have the capability and so your juice runs out at a faster rate. Its bloody frustrating. No matter how many times I say this is my new normal and I just have to get used to it, it is very frustrating. I can’t help but have a chuckle at myself sometimes, as I try to get up ‘quickly’ in an ad break of a program to make a cuppa or go bathroom. There is no moving quickly for me anymore. And then when I do get up, I hobble like a, I don’t even know what...my supervisor sent me a message this afternoon asking if I could go see him quickly. I laughed to myself...and as he saw me hobbling towards his office, he asked whats wrong...I cracked up and told him ‘no quickly for me anymore’. He had a wee laugh too...
Hubby came home from his holiday with my cousins on Saturday. He had a blast and brought some fish home where he proceeded to divvy it up amongst people. It was his choice who he gave it to, and I was really impressed. I thought he was very kind. We ended up having an impromptu gathering which was really lovely. Hubbys brother had come up, the three of us had a few drinks and then the babies all came home with a couple of our friends in tow...so out came the darts. So even though it was a 2.00am bedtime for me, it was actually a really chilled out weekend - perfect!
My trip to Melbourne to stay with my other sister is looming up very quickly. Can’t wait to spend some time with her. We’ve never really spent a lot of time together but this journey seems to have brought us closer. I have often talked about those whom I feel should know better yet avoid contact with me. Yet this sister, even though we hadn’t been in too much contact, took it upon herself to ring me when she found out about my diagnosis and has kept in touch, and when she heard I was going over last year, was determined to be there to see me. That is pure gold...you don’t forget things like that. That is what is important to me now. “People” - actions speak louder than words for sure. They don’t have to be big sweeping gestures, simply making it known that I am thought of. The only thing wrong with that saying though is that it doesn’t apply to me too much these days. My heart means well and my head tells me I want to do something for someone...but my body tells a completely different story and doesn’t seem capable of carrying anything through. Since the lovely long weekends, I feel like I have been avoiding talking to anyone and I feel a bit guilty. I think I wrote about it in an earlier post, but I just don’t feel like ringing anyone, or messaging or emailing anyone yet I don’t know why...I’m not depressed, in fact I am loving the summer, I’m not pissed off at anyone (that can change in a heartbeat!) - weird. Consumed with myself? Probably...
My facebook page is still deactivated and I don’t miss it one iota! Sometimes I feel a bit cut off and I don’t take many pics now cos no fb to put them on...and I don’t post on here everytime I take another photo...but its ok, I can cope with that feeling. Sometimes I think about doing an online dairy...more about what I do each day, or how each day has gone, more than about keeping people up to date with the cancer thing...I could put pics on that...I don’t know...just rambling now. Its after 11.30pm now, I should really be trying to settle down to get a bit of shut eye. The wind is blowing quite fiercely, its too hot to shut both windows so the open one is rattling the curtain hooks with the curtain blowing about, quietly driving me nuts. To shut it or keep it open? Such a tough decision to make at this time of the night...
Tuesday 16th January 2017 - 11.40pm
Middle of the first month already...cripes xx
Thursday 11 January 2018
aches & tiredness - not such a good combo
Its not a good idea to start changing up your pain meds when you have work the next day...I know this for a fact. My GP isn’t too keen on me continuing taking the paracodeine due to my fatty liver and so since she said that a wee while back, I have been trying not to take them too often. Usually in the morning when I get to work and then before I go to bed each night, I have been taking the stronger strength codeine to get me through a painfree night of sleep.
But this week, I had the bright idea I would stop the paracodeine completely and try just taking paracetamol and they appear to have been doing an ‘ok’ job. And then last night I decided I would try and stop using the straight, stronger codeine and so I took a nortriptyline before going to bed. My GP had given me these the same time she encouraged me to stop the paracodeine. But I had this feeling that one wasn’t enough but couldn’t be bothered getting up to take another one. When I woke up this morning, I was in so much pain that I swallowed a couple of paracetamol straight away and then usually when I have my shower, its almost like it thaws me out but not today...anyhow, I ended up leaving work an hour early cos I was tired (another late night last night - more on that soon) and the aching was just depleting me of anything and everything, even after giving in and taking my usual painkillers. So I came home, took a couple of the stronger codeine and crashed out for and hour and a half. Wasn’t really until I woke, that the meds really kicked in. So its definitely better to keep on top of pain than starting from the beginning constantly. So for tonight and tomorrow I will continue with my usual painkillers and then starting tomorrow night I will try the nortriptyline combined with the paracetamol and see how I go over the weekend. If it doesn’t work, then it doesn’t work but at least I will have given it a good go. Actually the other alternative is to wait until I am on holiday at the end of the month where I’ll have more time without having to worry about it affecting work. Good idea...
But this week, I had the bright idea I would stop the paracodeine completely and try just taking paracetamol and they appear to have been doing an ‘ok’ job. And then last night I decided I would try and stop using the straight, stronger codeine and so I took a nortriptyline before going to bed. My GP had given me these the same time she encouraged me to stop the paracodeine. But I had this feeling that one wasn’t enough but couldn’t be bothered getting up to take another one. When I woke up this morning, I was in so much pain that I swallowed a couple of paracetamol straight away and then usually when I have my shower, its almost like it thaws me out but not today...anyhow, I ended up leaving work an hour early cos I was tired (another late night last night - more on that soon) and the aching was just depleting me of anything and everything, even after giving in and taking my usual painkillers. So I came home, took a couple of the stronger codeine and crashed out for and hour and a half. Wasn’t really until I woke, that the meds really kicked in. So its definitely better to keep on top of pain than starting from the beginning constantly. So for tonight and tomorrow I will continue with my usual painkillers and then starting tomorrow night I will try the nortriptyline combined with the paracetamol and see how I go over the weekend. If it doesn’t work, then it doesn’t work but at least I will have given it a good go. Actually the other alternative is to wait until I am on holiday at the end of the month where I’ll have more time without having to worry about it affecting work. Good idea...
After our jaunt to the beach Monday night, my big girl and I along with one of my young friends, did the trip again last night. The water was bloody freezing although you warmed up after a while, until you got out! That walk up the beach to get your towel...it felt like the middle of winter! But another great evening - I love doing stuff and getting to enjoy our great summer. We stopped off at McDonalds in Warkworth for dinner and then I was able to sit in the backseat and enjoy being driven home while my mate drove..it was great. I struggle with the lights of the oncoming traffic and have done for a number of years but always, we would continue to leave late with me swearing each time, it was the last! I think we got home about 10pm- ish but then my poor mate had a further drive to get home and she doesn’t live anywhere near here, so the poor girl had a longer trip, made even longer by the closure of the motorway going in her direction - bloody inconvenient especially after a long day. So I am thinking a combo of too many late nights is what is responsible for my aches today, exasperated by not actually getting on top of my daily aches...merely ‘just coping with them’. But so totally worth it...its so good to get out and do stuff, I have really felt like we have utilised the great weather and so bloody wonderful to not be at home either stuck in front of the TV or lying in bed at 7.30pm! Actually living life...(for 2 nights, haha, funny)
I rang hubby last night when we got home - he was getting ready to crash out in his tent cos they were getting up to go out fishing this morning at 5.30am. They had been catching quite a few kahawai and think they were going to try getting some snapper. So hope they’ve had a brilliant day. They’re looking at coming home either tomorrow or Saturday. So guess I could be in for a surprise after work tomorrow. Think he is getting a bit homesick now - said he was missing us. I’ve enjoyed the break...once I got used to him not being here. Its quite chilled with just me and the kids. Not that I’ve seen two of them very much and not much cooking going on.
Three of us are currently sitting outside in the backyard - my baby girl is at the movies with a mate. It’s so quiet...nothing from the neighbours, no TV going inside, a few cars going past and we are all in our own zone...hope my afternoon sleep doesn’t keep me awake all hours of the night and so I go back to work tomorrow feeling like crap. At least it’ll be Friday...
Thursday 11th January 2018 - 9.52pm
Three of us are currently sitting outside in the backyard - my baby girl is at the movies with a mate. It’s so quiet...nothing from the neighbours, no TV going inside, a few cars going past and we are all in our own zone...hope my afternoon sleep doesn’t keep me awake all hours of the night and so I go back to work tomorrow feeling like crap. At least it’ll be Friday...
Tuesday 9 January 2018
Good oncology visit - January 2018
I had a really positive visit with the oncologist yesterday. CT scan was clear which means the cancer continues to respond to my existing treatment plan. God, what a relief. Even though I kind of figured everything was ok as I continue to feel so well with no changes in any way. But doubt is always sitting there...ready to make its presence felt. My mate who comes with me when I am getting results and takes my notes, asked when my infusions will stop and explained we had been told when I was first diagnosed that you only had them for two years. Reuben (I actually got to see my oncologist this time) said that he “begged to differ” and that studies now show if the zometa infusion is working for someone, why stop it. So we have decided to continue on with my existing treatment. Stay on the daily dose of exemestane, monthly zometa (zoladronic acid) infusion and monthly zoladex hormone injection. Why change something that’s working? And I am happy to continue as is...so all in all, Reuben was very pleased with how I am doing. I really have to thank my lucky stars, although unlucky to be diagnosed with a terminaI disease, I am doing so well. You think of those poor people who get diagnosed with only months to live. How cruel...
And so I toddled off to work after dropping my mate home and man did I struggle to get through the afternoon. I got to work about 12.30 so it shouldn’t have been too much of a hardship but are you kidding me!!!! The afternoon dragged and I was so tired...when I got home, it was roasting hot and it was just my big girl home, so we jumped in the car with togs and towels and went for a drive to our usual beach, an hour away...why not make the most of both the beautiful weather and the quiet traffic. So we got takeaways and had dinner at the beach followed by a swim. It was bloody awesome! What a great way to pass an evening. Beats sitting watching old re-runs on TV or being shut in our rooms.
Admittedly I was pretty exhausted when we got home.
And so what am I doing tonight? Its almost 7.30pm and I’m in bed updating this and listening to music...feeling a bit out of sorts to be honest. Bit fed up cos since hubby went away, I have basically done EVERYTHING...cook dinner, do dishes (get some help with those sometimes), put rubbish out, bring bins back in, do the washing, bring it in to fold up and put away and so on. I really ask myself what this lot will do when I finally kick the bucket. L-A-Z-Y... describes them all quite well. They just don’t think...it doesn’t occur to them how tired and sore I am and how I would appreciate some help, and yes I know I should probably put a bomb under them but honestly if they can’t stop and think about how I am...well fuck it, I’ll just keep plodding on and doing shit and not worry about relying on anyone. It is really disappointing though. They all say they are sick with worry about my cancer and about me dying, but not enough to actually do anything to help. Not worried enough obviously...
Time to pull my head in I think...
Tuesday 9th January 2018 - 7.42pm
And so I toddled off to work after dropping my mate home and man did I struggle to get through the afternoon. I got to work about 12.30 so it shouldn’t have been too much of a hardship but are you kidding me!!!! The afternoon dragged and I was so tired...when I got home, it was roasting hot and it was just my big girl home, so we jumped in the car with togs and towels and went for a drive to our usual beach, an hour away...why not make the most of both the beautiful weather and the quiet traffic. So we got takeaways and had dinner at the beach followed by a swim. It was bloody awesome! What a great way to pass an evening. Beats sitting watching old re-runs on TV or being shut in our rooms.
Admittedly I was pretty exhausted when we got home.
And so what am I doing tonight? Its almost 7.30pm and I’m in bed updating this and listening to music...feeling a bit out of sorts to be honest. Bit fed up cos since hubby went away, I have basically done EVERYTHING...cook dinner, do dishes (get some help with those sometimes), put rubbish out, bring bins back in, do the washing, bring it in to fold up and put away and so on. I really ask myself what this lot will do when I finally kick the bucket. L-A-Z-Y... describes them all quite well. They just don’t think...it doesn’t occur to them how tired and sore I am and how I would appreciate some help, and yes I know I should probably put a bomb under them but honestly if they can’t stop and think about how I am...well fuck it, I’ll just keep plodding on and doing shit and not worry about relying on anyone. It is really disappointing though. They all say they are sick with worry about my cancer and about me dying, but not enough to actually do anything to help. Not worried enough obviously...
Time to pull my head in I think...
Tuesday 9th January 2018 - 7.42pm
Tuesday 2 January 2018
Pondering
Its a little before 10.00am Tuesday morning - the last day of my last ultra long weekend over the Christmas / New Year period and I am lazing in bed with some toast and a cuppa. The house is as quiet as a mouse, except for one of the cats who is prowling around trying to find the ideal place to lie down. There are even very few vehicles driving passed our place...normally it’s a fairly busy road.
The girls and I decided to go for a drive yesterday. I desperately needed to get out of the house. While I enjoy staying home for the two days of a normal weekend, up to 3 or 4 days gets a bit much. So we ended up driving down to Waihi Beach, which is a two hour drive. We left home close to 12.30 so spent the afternoon down there, leaving to come home at 5.30pm...so really only 3 hours down there but it was really enjoyable. I don’t really get to spend too much time with my little girl anymore...what with her working retail, her shifts are erratic and then she works all day Saturday. In between all that, she is off out with mates and boyfriend. She often makes a point of jumping on my bed for a chat when she gets home which is lovely but sometimes I am so tired, I can hardly keep my eyes open and I fall asleep on her. So yesterday was most definitely a treat and I loved every moment of it even the slow crawl to the motorway coming home at the end of the day and the rain which fell randomly at various places.
Hubby has been away for two nights now...the first night I found it hard going to sleep even though I was quite tired and woke intermittently until I finally fell into a heavy slumber at some ridiculous hour. I am ok during the day although he is often on my mind...wondering what he is doing, wishing I could see his 3 person tent up with his airbed made up etc - his little home for the next two weeks. I hope he has a wonderful time and gets in lots of fishing which is one of his passions and doesn’t get much of a chance to partake in.
While he is away, I have a couple of appointments coming up. A CT scan this coming Thursday morning - at 7.30am at North Shore Hospital for goodness sake!!! They must be trying to squeeze me in, as I have an oncology appointment on Monday 8th January. They like to be able to give me the results at these appointments. There’s always a bit of anxiety at this time. Even though there is no evidential reason to be...I feel as well as I have all the way through to date so there is no reason to believe that anything has changed. But anxiety is very much one of the major symptoms of having cancer. It hangs over your head constantly - you are constantly filled with fear because you know for certain that one day you will be given the news, your cancer has spread and I’m sorry, there’s nothing more we can do for you. But when? when will that day come? And so we spend the whole of the time we have left, even the good, healthy time - wondering when we’re going to die...how will our families cope and probably coming to terms with the biggest hurdle of all for me, I won’t be here to console my girls...hubby too of course but my babies, god that truly hurts my heart.
Sometimes I even wonder if this blog is a good idea because I know my babies read it...so they get to read my fears and I don’t know that I like that...it was a comment my baby girl made to me the other day. I had said something about how the fear hangs over you most of the time, and she replied something along the lines “I know exactly what you mean”. Sometimes I am so consumed by my own fear and being wrapped up in the unfairness of this that I forget how it affects those around me. Do I make it worse for them by the things I say? I often make inappropriate jokes about having cancer but the way I see it, is that I am being open about it...its never a taboo subject...it is very much a part of our lives but do I make it too much a part? But it can’t be a serious subject all the time...we have have a bit of a laugh about some aspects of it...on Christmas night my baby girl also asked me “do you think we will have many more Christmasses?” It breaks my heart that she even has to think about that...
For now I am well and even when you compare how I was this time last year, I am much better. Last summer we hardly did any drives so a year later, I have my driving mojo back again. To me that is definitely a sign of progress! Maybe last year I was still recuperating from all those surgeries I’d had 12 or so months earlier. So shouldn’t we be making the most of this healthy time? But feeling anxious is very real especially when a scan is coming up and then waiting for the results. None of us involved in this journey gets away scott free. My loved ones get to worry about me...and to see the changes in me. For me, I have to cope and deal with those changes. And I struggle fiercely with them. I talk often about my tolerance or rather, the lack of it. I gave a family member a bit of a telling off the other day on the phone...I often have to think before I speak and this happens more often than not at work. The constant aches...even walking down the back steps the other day...theres only two of them once you step out the back door! But I had to step sideways down them, one at a time. What I didn’t realise was that son in law was out there, he could hear me groaning with each step and asked if I was ok...I couldn’t help but laugh at the ridiculousness of it...plodding my way down two steps, you’d think I’d walked a few levels down or something. But actually, it was really nice to hear him ask...often hubby just ignores me. He’s probanly so used to hearing me because every time I get up out of an arm chair or get out of bed, its no easy fete. I have to psyche myself up to do it...and actually that is what I really hate. Cancer has taken away my freedom of movement - with ease I mean. But hey, as I have said many times before, if this is all I have to endure, then I need to be grateful. But I do think about me pre-cancer and am envious at those memories. But I am alive and well and therefore am grateful...
Coming up two years metastatic...with many more to go🙂
Tuesday 2nd January 2018 - 11.00am
The girls and I decided to go for a drive yesterday. I desperately needed to get out of the house. While I enjoy staying home for the two days of a normal weekend, up to 3 or 4 days gets a bit much. So we ended up driving down to Waihi Beach, which is a two hour drive. We left home close to 12.30 so spent the afternoon down there, leaving to come home at 5.30pm...so really only 3 hours down there but it was really enjoyable. I don’t really get to spend too much time with my little girl anymore...what with her working retail, her shifts are erratic and then she works all day Saturday. In between all that, she is off out with mates and boyfriend. She often makes a point of jumping on my bed for a chat when she gets home which is lovely but sometimes I am so tired, I can hardly keep my eyes open and I fall asleep on her. So yesterday was most definitely a treat and I loved every moment of it even the slow crawl to the motorway coming home at the end of the day and the rain which fell randomly at various places.
Hubby has been away for two nights now...the first night I found it hard going to sleep even though I was quite tired and woke intermittently until I finally fell into a heavy slumber at some ridiculous hour. I am ok during the day although he is often on my mind...wondering what he is doing, wishing I could see his 3 person tent up with his airbed made up etc - his little home for the next two weeks. I hope he has a wonderful time and gets in lots of fishing which is one of his passions and doesn’t get much of a chance to partake in.
While he is away, I have a couple of appointments coming up. A CT scan this coming Thursday morning - at 7.30am at North Shore Hospital for goodness sake!!! They must be trying to squeeze me in, as I have an oncology appointment on Monday 8th January. They like to be able to give me the results at these appointments. There’s always a bit of anxiety at this time. Even though there is no evidential reason to be...I feel as well as I have all the way through to date so there is no reason to believe that anything has changed. But anxiety is very much one of the major symptoms of having cancer. It hangs over your head constantly - you are constantly filled with fear because you know for certain that one day you will be given the news, your cancer has spread and I’m sorry, there’s nothing more we can do for you. But when? when will that day come? And so we spend the whole of the time we have left, even the good, healthy time - wondering when we’re going to die...how will our families cope and probably coming to terms with the biggest hurdle of all for me, I won’t be here to console my girls...hubby too of course but my babies, god that truly hurts my heart.
Sometimes I even wonder if this blog is a good idea because I know my babies read it...so they get to read my fears and I don’t know that I like that...it was a comment my baby girl made to me the other day. I had said something about how the fear hangs over you most of the time, and she replied something along the lines “I know exactly what you mean”. Sometimes I am so consumed by my own fear and being wrapped up in the unfairness of this that I forget how it affects those around me. Do I make it worse for them by the things I say? I often make inappropriate jokes about having cancer but the way I see it, is that I am being open about it...its never a taboo subject...it is very much a part of our lives but do I make it too much a part? But it can’t be a serious subject all the time...we have have a bit of a laugh about some aspects of it...on Christmas night my baby girl also asked me “do you think we will have many more Christmasses?” It breaks my heart that she even has to think about that...
For now I am well and even when you compare how I was this time last year, I am much better. Last summer we hardly did any drives so a year later, I have my driving mojo back again. To me that is definitely a sign of progress! Maybe last year I was still recuperating from all those surgeries I’d had 12 or so months earlier. So shouldn’t we be making the most of this healthy time? But feeling anxious is very real especially when a scan is coming up and then waiting for the results. None of us involved in this journey gets away scott free. My loved ones get to worry about me...and to see the changes in me. For me, I have to cope and deal with those changes. And I struggle fiercely with them. I talk often about my tolerance or rather, the lack of it. I gave a family member a bit of a telling off the other day on the phone...I often have to think before I speak and this happens more often than not at work. The constant aches...even walking down the back steps the other day...theres only two of them once you step out the back door! But I had to step sideways down them, one at a time. What I didn’t realise was that son in law was out there, he could hear me groaning with each step and asked if I was ok...I couldn’t help but laugh at the ridiculousness of it...plodding my way down two steps, you’d think I’d walked a few levels down or something. But actually, it was really nice to hear him ask...often hubby just ignores me. He’s probanly so used to hearing me because every time I get up out of an arm chair or get out of bed, its no easy fete. I have to psyche myself up to do it...and actually that is what I really hate. Cancer has taken away my freedom of movement - with ease I mean. But hey, as I have said many times before, if this is all I have to endure, then I need to be grateful. But I do think about me pre-cancer and am envious at those memories. But I am alive and well and therefore am grateful...
Coming up two years metastatic...with many more to go🙂
Tuesday 2nd January 2018 - 11.00am
Monday 1 January 2018
2018 has arrived...
Happy New Year!
It’s almost two hours into the new year...hubby left at midday today with my cousin to go up north for a couple of weeks. Its just my two girls and I at home...not one alcoholic beverage passed any of our lips. I’ve been passing the evening watching re-runs of old movies, while the girls have each been doing their own thing.
I had a couple of visitors arrive on the doorstep at about 11.30pm-ish. It was my very dear friend and her man, they had been having drinkies at her cousins place not far from here and she decided she needed to come and see me to say happy new year in person. I can’t really express how much that gesture means to me. How lovely that someone thought enough of me to do that...she left her cousins and was here in time to see 2018 arrive while here. Once midnight hit and we had hugs and kisses all round, they toddled off home. It was lovely...and made me feel not quite so alone.
Hubby rang just after midnight, my sister had text me earlier in the evening but apart from them, no other texts or phone calls - everyone is busy seeing the new year in (or not) with their own loved ones or busy getting pissed and seeing the new year arrive with blurry eyesight and wobbly legs. Lets hope their eyesight doesn’t remain blurry for the remainder of the year. That they have clarity in what they see and the decisions they make.
2017 has been such a year of adversity for so many people...my friend included and her greatest wish is for me to continue to have good health...not for herself and the shit they continues to endure, not through their actions but those of someone else who is so consumed by their own demons, they aren’t able to see what they’re doing to those that have their back. So my hopes and wishes for 2018 are simple...I hope that all those I love but especially my girls and hubby and yes myself imcluded - to continue to be safe and healthy...that we all learn the important things in life - to know that being wealthy doesn’t necessarily mean having lots of money or material things but the true importance of continued good health and the unconditional love of those most important to you.
Monday 1st January 2018 - 2.44am
It’s almost two hours into the new year...hubby left at midday today with my cousin to go up north for a couple of weeks. Its just my two girls and I at home...not one alcoholic beverage passed any of our lips. I’ve been passing the evening watching re-runs of old movies, while the girls have each been doing their own thing.
I had a couple of visitors arrive on the doorstep at about 11.30pm-ish. It was my very dear friend and her man, they had been having drinkies at her cousins place not far from here and she decided she needed to come and see me to say happy new year in person. I can’t really express how much that gesture means to me. How lovely that someone thought enough of me to do that...she left her cousins and was here in time to see 2018 arrive while here. Once midnight hit and we had hugs and kisses all round, they toddled off home. It was lovely...and made me feel not quite so alone.
Hubby rang just after midnight, my sister had text me earlier in the evening but apart from them, no other texts or phone calls - everyone is busy seeing the new year in (or not) with their own loved ones or busy getting pissed and seeing the new year arrive with blurry eyesight and wobbly legs. Lets hope their eyesight doesn’t remain blurry for the remainder of the year. That they have clarity in what they see and the decisions they make.
2017 has been such a year of adversity for so many people...my friend included and her greatest wish is for me to continue to have good health...not for herself and the shit they continues to endure, not through their actions but those of someone else who is so consumed by their own demons, they aren’t able to see what they’re doing to those that have their back. So my hopes and wishes for 2018 are simple...I hope that all those I love but especially my girls and hubby and yes myself imcluded - to continue to be safe and healthy...that we all learn the important things in life - to know that being wealthy doesn’t necessarily mean having lots of money or material things but the true importance of continued good health and the unconditional love of those most important to you.
Monday 1st January 2018 - 2.44am
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