Ouchies

Been a pretty sore week, but there has been good news! The early morning mri showed the brain cancers had reduced in size and nothing is pressing on anything else and it is all very good and nice. This year there haven't been a great many victories - or if there have been they've been quickly forgotten.

So. Brain is good, just have to work on everywhere else and hope and hope that this new chemo is effective. Its very different to the old protocols - just the way it makes you feel physically, psychologically and emotionally. This chemo is known to cause aches and pains in your bones and muscles. Its difficult to say what pain is caused by what (which drives me mad), and so what to do about them is unclear. It also has some pretty nasty fatigue which, once its taken hold, its pretty difficult to get out of it. Just have to keep going until I'm comfortable with stopping for a while. So basically sleeping until I wake up in need of pain medication.

The jaw pain thing is all a bit weird. As I'd said it hasn't been bothering me much since the increase in dose, but it turns out without that coverage its probably the worst pain I have. We completely forgot my evening meds the other day (which includes all my long acting pain drugs). So I then woke up at 1am with horrible pain in the left of my jaw, hardly aware of any of any other discomfort. Plan is to find a dentist or something tomorrow after bloods who will fix my mouth, and it will somehow then trigger the death of all the tumours, and I will no longer be a bald, bloated, dependant alien. Right, now that that's settled we'll just have to work a good date for the party!

Sigh. So bloods and hopefully tooth stuff tomorrow, chemo friday, and some appointments with various dr's.

Oh and on top of the pain and all, I dropped my iphone in the loo! So dad's popped it in a box with some moisture absorbing super crystal things which may fix it all up. We find out tomorrow.

mystery pain

I've spent the day mostly just trying to sleep. I was lucky to be quite comfortable still last night and so was able to attend a friemds 21st which was lovely. Unfortunately i woke a few hours into the night with old pains worse and a new burning aching sensation down the back of my left leg. Despite hydro nd  panadol I've had little luck managing it, just better patches where the old pains are less and the new more localised. Hoping for a more solid night sleep tonight, starting with the valium rather than waiting til  i've woken up  a bunch of times to take it.

Apparently the left leg may very well be a result of the new chemo. Nasty aches and pains are among the more common complaints heard by a nurse who came round to deliver some syringes for hydro. so thatd be grand if it werent symptomatic of something more sinister. not loving being so drugged again, though its infinitely superior to the alternative pain/s.

early morning mri tomorrow of  my head and then onc doc later. hopefully a productive and not too uncomfortable day.

"A Blow Upon a Bruise"

Written in treatment room:
     Once again I've left it a little while longer than I intended - sorry! I really need to try do this at least weekly, otherwise I forget what I've written and whats happened and what I've written about whats happened. Like this week. And last week. Also sorry twitter people for failing to post yesterday like I promised.


With the increase in the Junistar my jaw hasn't been causing me any pain at all really, except when I would bite my lip eating (which was a lot for a few days). However, the numbness remains. The xray of the jaw revealed that I have an impacted tooth, most likely having nothing to do with the pain. So I guess I need to see a dentist. Fun. 


Fatigue was an issue again; there have been a few days where I only really woke up and left bed to eat. Its pretty constant actually, I've dozed of d 20 times just whi


Written at home a few hours later:
     Ok so I pretty much gave up after falling asleep on the keyboard for the hundredth time and here I am at home, a bit more awake hopefully gonna be able to finish the post. Funny it happened just as I was telling you how tired I am. Its hard to tell if it was the new chemo hitting me or if its from sitting in a chair on lots of drugs for hours and hours, or if its how little sleep I got last night or (the more likely) all of the above.

Yes! Thats right, a new chemo. Yesterday I was booked in for a CT scan of my chest (much better detail than an xray) followed by blood tests. My veins were very uncooperative. Eventually one of the people trying to get a canular in wound up pull out the local anaesthetic and going for the wrist. Something unusual happened during the scan; the injecting of the contrast dye briefly caused severe pain up the right arm for a moment. I had a moment of panic, wondering if the canular was indeed in the vein. Though seconds later I tasted the funny taste and felt very very hot, both signs the dye was going where it was meant to.

We went over for bloods then, and I was pretty much certain by the time we got there that I was very low on haemoglobin (the walk from one end of the hospital to the other had left me very short of breath). They got the port first go and it was all done pretty quick so we left the building. Just as we were about to get into the car I got a call from the nurse I'd just seen saying my oncologist wanted to see me. So we went up, me panting and sobbing; exhausted, low on haemoglobin, out of breath and certain it could only be bad news.

I'd like to say I was totally wrong and that it was good good news. Well it wasn't really either. Judging by one of the tumours in my chest (in soft tissue, easier to judge growth) there appeared to be a very slight amount of growth, though it was within the margin of error so technically one cant say that there was any growth... or something... I dont know. I find it so difficult to retain the details of anything I hear or read. Other sites appeared to be stable, but not shrinking. So the decision was not to continue giving me a chemo which it appears the cancer cells are getting used to and instead switch to a new, very different protocol. I dont know if any of you look the names o these things up, but I'l post the name of the two drugs next post (I dont remember them today) just in case its of interest to people.

So its a little bit of a blow. On a bunch of bruises. No gonna lie, its been a very difficult year. Its becoming easier for me to understand people who rush into alternative therapies over usual treatment - the need to feel more involved and in control of treatment and illness is pretty dang strong. Dont you worry, I have no intention of abandoning the empirical evidence ship. Its just it'd be nice if the treatments would work a little longer, and I had more power in the situation than being driven (I cant even get myself to my own appointments) to various appointments.

So today I had one unit of blood and the new chemotherapy. It was a long day even without the second unit of blood (to be had tomorrow morning, there wasn't enough time today). I could barley keep my eyes open after a short while, as you may have noticed in the first few paragraphs haha. One factor which certainly contributed to the tedium of the day is the unusual increase in pain I experienced last night. Pain, or at least awareness of sites which would be painful without medication, has been gently increasing over the last week or two. I woke in the middle of last night unable to move enough to get the breakthrough pain on my bedside table. I could reach my phone thankfully. I'm more comfortable now and hope that I'l be able to do the things i was hoping to do this weekend. One of the pains is in my left arm and thought perhaps to be related to the painful dye injection/canula thing - apparently the dye can cause discomfort or something for a few days. I haven't experienced anything like it before, so I wonder if perhaps the vein was damaged from the pressure? Its high pressure and little veins... I dont know...

I've had some lovely days with some friends and family. I got to see my grandfather, youngest cousin and uncle for the first time in years so despite not getting a lot of time, it was still special. My nana was also down which is always lovely.

I cook most days trying to find exciting things to try. Such a great way to keep busy and active. Well, as active as my situation permits. I think I've covered the major events of recent weeks, I'l be off to bed now!

Since this morning

we went to hospital for my chemo appointment and where my nurse for the day was ridiculously well informed and helpful as she'd been a dental nurse for several years earlier in her career. She explained it was all probably caused by pressure on a particular nerve in the jaw. We went ahead with chemo which only took an hour and a half (a short day is a good day). During that time my onc doc came by to check out what was happening. He agreed with the nurse, but couldn't say for sure what was putting the pressure on the nerve, but knowing my luck and history and situation it is probably connected to my cancer. So maybe a new site. Trying not to dwell on that possibility and its implications though.

After chemo we went down to imaging and I had the xray of my jaw as well as the chest xray we were going to get next week anyway. By this point I was becoming increasingly sore in my back which was all quite strange. The rather unpleasant pain in my jaw and head was being managed by the hydro, yet my back was suddenly bad enough to make me really quite uncomfortable. This does suggest that its nerve pain which doesn't respond to opiates as well.

The palliative care people were called and my junistar (long acting hydro) was put up 8mg and permission was given for mum to give me a subcutaneous injection of short acting hydro. This hits harder and faster than oral and is very helpful with getting some control. I dont love mum doing it, feels weird, but its better than waiting an hour or so for someone to get here for a 5 minute procedure which someone here could do fine anyway.

So far I'm not getting any nausea or anything from the chemo yet which is a relief. Even more so now I have this back pain. Nothing quite like vomming when in intense nerve pain. Fatigue is really beginning to hit now so I might leave it at that. Oh, and also apologise for what was apparently very... creative grammer and spelling in this morning's post - you see I was typing it on my iphone and as usual it didn't occur to me to proof read my post. Hopefully it all made sense, and hopefully I wont spend the night waking every hour to take more breakthrough pain to keep on top. Sigh. And it had been such a good week. So exhausted. And I'm only going to get worse over the next few days.

Did I make the right call?

I didn't sleep well last night. In fact at 4something I lost feeling the the left half of my bottom lip. This was quickly followed by pain in the gum and teeth behind it. As this pain grew worse a headache developed behind my left eye and spread down to my ear area. So I get mum down and have some drugs for the pain, which is by now pretty unpleasant.

How serious is it? How relevant to my cancer? What if it's a dental thing? Weird stuff happens when your wisdom teeth come in right? I don't know if mine have. I never feel. Confident in my counting of my teeth.

Mum calls the link team and they agree with her that we should go in to the ER. Naturally I start crying, and argue that if we went in now (must be 5 30 by now) we would spend the next four or five hours explaining everything over and over to unhelpful dr's and nurses in the ER, waiting for a room in 14b I dont want. By the time anything possibly useful starts happening itl be time for my chemo appointment anyway and we'd have lost half our night's sleep.

So we didn't go. Instead I had hydromorphone every hour and slept in a little more than planned. Our appointment is at 11am as it turns out, so we're going to head in when we're ready. Dad's going to call them ahead of time and explain so maybe a onc doc will hear about it and be able to have a scan booked or an opinion ready by the time we get there.

It all felt a lot scarier at the time. It was a lot like the time I woke up and my left half had gone numb, which was when I had a bleed from the at the time undiagnosed brain tumours. But we waited days that time to talk to someone and that was much... bigger. This time we aren't really delaying at all, assuming I'm right about the waiting.

There have been no new symptoms since the headache. An my left is barley blurry, if it's blurry at all.

I should have mentioned in an earlier blog actually that that has gotten better in the past week, and in the last few days I think my little toe on my left foot is less numb than it has been! All exciting indicators that the brain tumours are decreasing in mass, or at least that the pressure is going down despite our dropping the dex doses weekly now.

I feel more confident about the choice to stay. I guess because I didn't wake up in really bad shape I feel encouraged. It's always a shock though, how quickly things can change. You can be doing really well (or really bad), and suddenly you're wondering if you need an ambulance (or wanting to try making profiteroles).
You don't get used to it, and it makes one feel pretty unsafe. You have no idea what might happen- the discovery of the brain tumours and other mets earlier this year year is the perfect example.

Il post again later and let you know what happens.

-Insert title-

Had some good food fun this week. Cooked some inventive yummy things. So I've managed to keep on my feet a bit and keep my body and mind occupied. I've made mini choco muffins, some with frangelico cream and others with rum cream. I made cheese polenta cakes with a beetroot reduction and poached eggs and stuff, umm, a yummy improvised pasta and today french toast cups! Savoury with eggs and bacon and sour cream, sweet ones with caramelised apple and frangelico syrup'd strawberries and whipped cream! Pretty excellent actually. Good to keep busy, especially the day before chemo. Also good to eat well the day before chemo, since you dont know for sure when the next time you eat well/enjoy eating will be. 

Fatigue has been the major battle this week. Though my platelets were actually improving on their own (yay, bone marrow working again!!) for a few days before last weeks chemo kicked in, my haemoglobin got fairly low, probably contributing a lot to the exhaustion. Had a pretty low day sunday where I only really left my bed for a brief hospital trip for a cross match for my transfusion wednesday. Just one of those days you have no energy and everything makes you cry, so you spend it dozing and watching the big bang theory and the real l word.

The must irritating part of my being so tired so much is that I can barley read. The most I can get through is a chapter, and that takes a lot time because I fall asleep while reading them so often. At least it means the series is lasting a long time. But it'd be nice to finish some day so I could read some of the other books on my rather extensive list.

I've been sorer again this week. I dont think I've had any hydromorph breakthroughs, though I've been taking panadol most days. Which is enough, as it amplifies the effects of opiates which I'm already on.
The pains are primarily in my right shoulder surgery site my back in various places (tumour sites largely I think. Dont know what it means) and my hips. I'm not really sure if the hip sites are the tops of the femurs where the rods were inserted (I think. Maybe I should have asked more questions about the details of the procedure. Maybe not. I dont really like visualising it to be honest. Especially the idea of them hammering/tapping the rods down into my bones. That kinda freaks me out actually) or if its from the increase in movement and weight bearing, or new sites to worry about.

Still so many question marks. I'll be having an xray of my torso soon though, so that should tell us how things are progressing. If perhaps the tumours are going from not growing because of the chemo, to shrinking because of the chemo. That'd be, you know, pretty nifty. I'm feeling pretty good though tonight, which bodes well for tomorrow, which shouldn't be a long day anyway. Fingers crossed that once again I avoid a horrible day after and can just spend it feeling exhausted. I've been out of hospital for what must be over a month now I think. God I hope I can keep it up.