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

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

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.

‘Wig Wednesday’ - raising funds for child cancer 

Sunday 1st July 2018 - 2.20am 

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

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

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

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