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