Regarding my previous post – I just spoke to my Oncologist (who had e-mailed with my Liver surgeon) and it seems we had got numbers mixed up – when he spoke about 6 cycles, he had assumed I was on 2 week cycles (probably because of the Cetuximab, which IS a 2 week cycle). But my main chemo is given on a 3 week cycle – hence when he talked about 6 cycles, he meant 12 weeks (e.g. 4 of my cycles)
All in all this means the plan is “back to normal” – I am due one more cycle of chemo (starting Monday) and then a month off over xmas so that I am ready for surgery around mid-late January. I am somewhat relieved, my world is back in order now. But somewhat worried it’s back in order because I’ve been resposible for reminding my professionals of all the details of my case. I don’t want to be in charge, I hardly want to be invovled, I just want top notch medical scientists to do what’s best for me and get me cured !
But still, drama over for today 🙂
So I had my (somewhat brief) meeting with the liver specialist. Was a little annoyed he had not seen my latest scans – so what were his current decisions based on ? – but was partially to blame as I had been advised to bring the copy I had along with me, and had forgotten to do so.
In any case, he said that as I was responding to the Chemotherapy, I should continue with it for a little longer to ensure the required surgery was as minimal and risk-free as possible, advising me to continue for SIX cycles. I had been hoping it was only to be four, as these last two cycles will fall across the Christmas holidays and my planned snowboarding weekend in January, all the way up to the 1st Feb – which means I’ll get a nice present this year for my birthday anyway, as I would then come of Chemo for February in preparation for surgery in March.
No date was set in stone for the surgery though – More CT / MRI scans after the 6th cycle would determine what happened next. There is a small outside chance that the chemo might “clean up” the liver all on it’s own, but this is quite rare.
In truth, right now, I’m gutted. I was looking forward to a “Chemo free Christmas”, esp. as each cycle gets harder. I had put these dates and plans down as a mental crutch – waypoints to help me get through the long journey ahead, and in 10 mins with very little information provided, I’ve had it all messed around and shifted with what seemed to be a fairly uninformed decision. Probably not the wrong decision, and already I am mapping out what this new news means and finding solace with what it might offer : cheeky snowboard week in February anyone ? Might also be up for a mini-birthday celebartion now as well. And having my folks look after me over xmas week when I am struggling with the nastier part of it is surely not a bad thing.
All of which reminds me it’s injection day on Monday. &^%k. With these extra cycles now planned, am I once again going to persue getting a “long line” or “port” fitted, that will allow the drugs to be adminsitered straight into my central blood stream, not via my poor arms. This should remove the pain in my arms which is one of the very worse side effects, after maybe the vulnerability to cold.
Overall : Bah, humbug.
Yesterday I had two scans taken – a CT and an MRI scan – the check the progress of the chemotherapy I have been taking now for almost 2 months.
The CT scan showed that there were no other “mystery spots” other than what was on my liver, pretty much as expected. The MRI scan then offered better imagery on the lesions on my liver and was compared to the previous scan I had the day before going in for surgery (just over 3 months ago now).
The MRI showed that the largest lesion on my liver had reduced in size a little, and a smaller cluster of lesions elsewhere on the liver was not as pronounced. Which in summary is great – it means the secondary cancers (which we must surely now presume these lesions to be) are shrinking under the chemotherapy drugs I am taking, and hopefully will be easy to remove.
I have a meeting with a liver specialist next week to talk about what exactly the new MRI scan shows, and what my choices are regarding removing them. It is expected we will book some surgery for this; surgery which needs to be at least 1 month after I stop chemo, and preferably not much more than a month. So it is my hope we will stop the chemo mid-Dec (which is after one more full cycle) and schedule the surgery mid-Jan, giving me xmas off. Which would work well for enjoying that time with my family, as well as the cheeky snowboarding weekend I’ve booked in the new year !
Still battling through first week of cycle three. It’s not been pleasant – my arm still hurts, although somewhat less than Tuesday, but the drugs are pushing me on edge as always. With the addition of the Oxytetracyclene (to reduce the acne side-effect of Cetuximab – which it is finally starting to do) I am on about 16 pills a day, most of which get my system pretty wired. And with a little nausea I feel just like throwing them all up 😦
Mimi took this week off and has been taking care of me – perhaps this is why the blog is less “look at me coping” and more “look at me being pissed off with things” this week. I’ve had less need to soldier on and keep my life going, and have been allowed to just flake out all week, knowing I’ll still be fed, bought drinks and generally looked after. I miss coping, it felt good, but equally I guess I need an off-week, some time to just throw up my hands and say this is hard work and I’ll be glad when it’s all over and until then, things are hard.
Thanks for the offers of support this week – I’ve generally just kept myself to myself and spent most of my time with Mimi. Maybe next cycle I can call you all back ! It’s hard to invite people over when you know you are just going to be rubbish, and probably not up to much chat. But the whole “waiting for tomorrow” thing is not a good attitude when tomorrow is still quite a few months away.
Every day of each cycle gets a little better – my touchstone and mantra now. Today I pottered around Camden a little, saw a movie and enjoyed a tasty burger dinner. Tomorrow I might manage a little early xmas shopping in Angel. Life still potters on around the crappyness, and looking forward to at quite a few decent days before the next cycle has to begin.
Fine – so it’s cycle three.
Went to the clinic yesterday, go the Oxaliplatin in my arm – the second dose that has gone into the left arm. And f**k me it hurts – not just the usual deep pain in the vein, but most of the arm has gone numb and tingles, like a permanent pins and needles in the muscles. Really not a happy camper at all – had lots of trouble sleeping and pain-killers don’t really do much.
Might need to discuss other ways of getting this horrid drug going forward – one option involves a line in your arm with runs a tube up to the heart – which means no localised pain in the arm, but does mean I get a cannula sticking out my arm for the treatment duration which might be even more depressing. Or a surgical operation can put in a central line in my chest – which sounds like the least painful option, except for the whole “going for surgery” part.
For now, everything just feels like hard work and I just want to lie down and wait for it to go away. But that’s going to take days, so guess I need to fight through that, get some food, take all my daily drugs and keep up with life. Overall – Meh.
Today is a good day.
I picked up a winter cold at the weekend, and after a good couple of days rest, it’s finally starting to shift, I feel. It also seems my face, covered in tiny yellow spots for the last couple of weeks, has now started to react to the Ocytetracycline a litte now, and most of the spots have retreated, just leaving some red dots (which blend slightly with the freckles :). Futhermore, I am near the end of my cycle, so free of most pains and tiredness caused by the drugs, and the extra dose of Cetuximab I had on Monday does not seem to have added to any of the less pleasent side-effects. Also my facial skin, which had gone very dry, is beginning to feel a little better after all the moisturising I;ve been doing – partly thanks to my sweetie for actually getting me some mosituriser and reminding me to do it when I forget !
So now just trying to make sure I get out and about and do some more outdoors things before the next injection on Monday, which I am dreading a little naturally. Not sure that any form of exercise is going to be a good thing – burning up energy stores seems crazy when you’ve got less energy than you’re used to. Long walks and slow burning exercise could be the best idea – I feel a long walk around London Zoo might be in order – exercise AND monkeys, ideal for anyone’s recovery.
Not much more to report, other than a larger stack of boardgames and a couple of Wii games, which I have been enticing people round mine to play in leiu of heading outside too much. Don’t be shy people ! Also another scan is coming up later this month, hopefully then I’ll know a little more about “what happens next”.