It's been almost a year since I was diagnosed with Cancer and now seems a good enough time as any to end this blog. Don't think I'm going to gain anything more from this. It was started just as a way to keep a track of my treatment and that's going to be sporadic from here on I think, so ...
When sugarcane was introduced to Queensland they had a problem with cane beetles. Someone came up with the bright idea of introducing the canetoad to eat the beetles. Anyone who knows anything about Queensland will know just how brilliant a plan that was.
Well, when I think about canetoads now, I think about chemotherapy. Yep, it solves one problem but dang if it don't unleash a whole heap more.
It's been awhile since I updated this, but was waiting for my oncologist appointment so I'd know where I'm at. Was a little strange going back to oncology today as it's been around 3 months since I was last there getting chemo and I seem to have stricken that whole experience from my memory.
Anyway, blood tests came back normal but they're ongoing so I've got to do some more before my next visit. I should have a CT Scan in about 3 weeks so it'll be good to get that out of the way as well and then if that's all good there should be a big gap before I have any more scans.
My main problems though - the pins and needles in fingers and feet and numbness and joint pains and bone pains and bleeding nose etc etc, those are just the nasty little reminders that I did actually go through chemo and it may be some time (months/years/who knows) before they come right. I got a new painkiller to take and it's got side effects (doesn't everything) but apart from that there's nothing much I can do.
I'm at a point though where I'm so used to the numbness now I can't remember what it was like beforehand. It's the bone pains that really cause problems as there's no real pattern to when they occur and if it happens at night it's impossible to get back to sleep. The painkillers may help with that, we shall see.
Anyway, can't do very much till I come right. Can't work unless I find a job that'll allow me to work barefoot as wearing enclosed shoes just magnifies the numbing sensation, so for the time being just trying to make the most of the time on my hands by doing some writing and counting down to our holiday in a couple of months.
So though I'm not out of the woods, it may be that when I do walk out, I'll have a few little critters hopping along with me.
This is one of those good news/bad news posts. The good news is that my last blood test delivered a CEA result of 1.9 which is ... wait for it ... normal! So that's great.
The bad news is I don't think I've felt worse physically. The numbness of my hands and feet aside (and sadly I've gotten used to my feet feeling like crumpled up newspaper), I feel as though I've been trampled by a stampeding herd of elephants. Every muscle in my body aches and every joint from my wrists to my ankles is causing me pain. Resting doesn't help. Exercising doesn't help. Pain meds don't help. Hot baths don't help. Worst of all, it seems to be getting steadily worse as time passes, not better.
I'm off to the doctor this week to find out what, if anything, can be done to help, but having done some reading it seems it's just another long term side effect of the chemo. This one though is crippling. Will see what the doc says then report back.
I rather naively thought that once my chemo was behind me things would gradually improve, but it's proving to be the opposite. I'm still only working a few hours a week but even that's proving too taxing. A 40 hour work week is so far beyond what my body can handle, I can't even begin to plan for it.
I should have a visit with my oncologist sometime soon as well, so will find out what my good blood tests mean in terms of follow up scans etc.
Right, thought I better update this, though not a lot's been happening. I'm still in that transitional period between ending chemo and ... well, whatever comes next. I got hit with the flu or some serious bug that's been going around and that's the first major sickness I've had to deal with for about nine months (I mean, apart from Cancer). My immune system's done pretty well as I think I'm coming out of it now. Guess that means my white blood cells are up and running again, good thing I didn't catch that bug a month or so ago, that would have been a test.
My issues are the same, getting slightly worse as time passes. The neuropathy is pretty bad - numb feet and fingertips - makes it hard to do simple things sometimes. Wore gloves to work a couple weeks ago which helped a little but not the best solution. A bit sad when I have to call my wife to open tins and things for me because my fingers just won't cooperate, but hardly a major problem when I think back on how I felt during chemo. I still have joint soreness, mostly in my knees and ankles but occasionally in my elbows and shoulders too. Haven't found much of a cure for that, might just need a change in the weather to alleviate those problems. My nose continues to bleed on most days. Thought it might be the dryer air at night but even with a vaporizer going it didn't seem to change things.
Had a blood test this past week to check my CEA. Eagerly awaiting the results.
Saw my oncologist on tv last night talking about a trial to shorten the length of chemo for colon cancer patients, from 6 months (which is what I had) to 3 months. As most of the main problems associated with chemo (like nerve damage for instance) occur towards the end of those 6 months, if they can shorten it to 3 it would help immensely. Would have loved to have had 3 months of chemo instead of 6, wouldn't have lost what in essence feels like an entire year of my life to operations and treatment.
It's effectively been only 3 weeks since I finished my chemo (seems longer) and I'd like to say I'm back to some normality but my body's decided otherwise. My main issues at the moment are numbness in my feet and fingertips, as well as muscle pain in my legs, a bleeding nose every other day as well as the usual fatigue.
I've worked for 3 weeks now, no more than a few hours on the Sunday but last week I was almost unable to walk by work's end. My legs were so sore and I just couldn't feel my feet at all. I thought maybe the sudden change in weather was contributing but keeping them warm doesn't make any difference. After some reading, it seems like it's just the after effects of the chemo. Don't know when of if it will ever go away, I'll discuss it with my onc next month, see what he says. My finger tips are also causing problems: went to the grocery store this week and stood at the self-serve line a long time unable to peel open the plastic packing bags because my fingertips were numb.
The muscle pains in my legs I think may be attributed to the fact that after a long time of not doing anything physical, I'm up on my feet a lot more. The past three Saturdays I've had a long uphill walk from where my daughter plays netball and whilst it's felt good to get the exercise, don't think my body's coping with the change yet.
As for the bloody nose, that's a mystery. I had it at stages during chemo but this past week it's happened every day, so will have to do some research on that so I'll know what to ask the onc.
Shows you how amazingly powerful those chemo drugs are given that even now they're still causing me problems.
Oh, and one more thing I need to look up (note to self:) When I nod my head I get what feels like an electric shock in my feet. I'm sure that's not normal.
Been awhile since I updated this, mainly because I've been busy trying to get back to some normality in life. I'm only working a few hours a week and that's still proving trying (I woke up with swollen ankles on Monday after 5 hours work on Sunday evening). My fatigue is noticeably better but some days are better than others. I've got issues with numbness on the soles of my feet and in my hands, similar to what I experienced whilst I was getting the Oxaliplatin. I don't know if some of these side effects are going to be short term or things I'll have to deal with the rest of my life, but at the moment they're just annoying more than anything. My sensitivity to cold is also still an issue, especially since the temperature's plummeted of late.
Apart from that, very happy to be finished with chemo and to have my port out. I still get tired very easily but that should right itself in time.
I read that a lot of people have a sense of both relief and panic when finishing with chemo and I can understand now why. It's strange to go through so much only to find yourself not knowing if any of your treatment worked, or if it did, whether the cancer will come back. I don't see my Oncologist till next month and will have had two blood tests by then, so should have an idea of my post-chemo CEA then. Till then, just a matter of waiting.
Been trying to do some writing, but my brain's still not capable of concentrating for long periods. Hopefully that's only temporary too.
Well the past week and a bit has been trying. Last week was tough being the first week of no chemo. I was exhausted most of the time and had some nausea to go with it. By Sat I felt better and Sat afternoon I actually felt the best I have in 6 months. But then I worked 4 hours Sunday evening and that tired me out and to make matters worse, yesterday I went to get my portacath out.
I'm surprised how fast they organized it's removal, I thought I might have it for a few more months until the results of my blood tests are known, but the onc I saw last Tuesday was quite happy for me to get it out and I was happy to get rid of it.
So I couldn't eat or drink anything yesterday and that just compounded my fatigue from working the previous day. I showed up at North Shore hospital for my 1:30 appointment only to find that they had no knowledge of me. Some phone calls later they realized they'd booked me into Auckland hospital instead so I had to go there. Thankfully it didn't make much difference to my appointment time as I had to wait 2 hours once I got there anyway.
The procedure to remove the port started out the same as the insertion procedure only they did it under local anaesthetic and not general. It was a strange sensation feeling the pulling and tugging as they cut me open and pulled it out. Also strange to be talking throughout the procedure. My anaesthetist was Daniel Craig (I kid you not), so I chatted to him.
Anyway, was only a half hour procedure, have a sore shoulder today and not feeling too good, but should come right quickly. Really happy to get it out, will be able to swing my arm again without the fear of tugging the tube out of my neck, so that means I can do some running again soon.
So still in recovery mode, my next major event will be in three months when I see my onc and find out the results of the latest blood tests. Till then, just got to get my energy back.
Very happy to have my port out, I feel human again.