January 1, 2013 § 3 Comments
Well today is the first day of 2013. Another year has come and gone – one with lots of challenges, a few tears, lost hopes and a few more endings.
I have decided to welcome the new year simply. Reflecting on 2012 I have been very tempted to write it off as one to forget. But when thinking about writing this blog – a few days ago – I concluded that rather than wipe the slate clean I would simply get it into perspective. It is tough love sometimes and I guess I would put 2012 into that category. It wasn’t just the cancer but a range of other very difficult personal and professional challenges that together made 2012 a year I was keen to draw to a close. However, having always subscribed to the view that whatever comes our way is what makes us the people we are, I am resolved to reflect on 2012 as one of those years that in the journey of one’s life, was simply an energy sapping detour. So to 2012 I punctuate with a decisive full stop and poise the pen for the next paragraph of 2013.
Experience has taught me that luck and opportunity are things we make for ourselves. While I am still grappling with a fussy brain, poor memory and no hair I feel as determined as ever to make my own luck and opportunities count this year. I remain positive that this next phase will be a good one – as I am sure many others in the world do.
October 31, 2012 § 4 Comments
Only earlier today I was telling someone that I was feeling good and that my mouth had cleared up – certainly compared to a couple of weeks ago. Well once again I spoke too soon. After dinner tonight my teeth were aching, my gums literally throbbing and by tongue burning. I immediately did the mouth wash routine I have to do but even now – over 3 hours later, it is still hurting and feeling raw. I have to say that of all the chemo side effects this is the one that I hate the most – that, and the metallic taste. It really puts you off your food and even when you think you are having something nice to eat, it still tastes like metal !!!!!!!
On a happier note I saw my haematologist today. She is such a great lady – both a great clinician as well as caring. I feel very privileged to have struck the jackpot in having her on my side. Anyway, she says I am going really well – although she did say I have the look of someone battered about by five doses of heavy duty chemo treatment (seems make up can hide only so much !!). We are now getting to the point where we are starting to arrange the post chemo PET scan to see how the treatment has worked. There is every reason to believe all is on track – but I guess we will only know for sure once the tests are done. She was showing me all the results from my bloods – and the cumulative affect of the chemo. It really brought home to me just how much it knocks the system around and how dramatic the changes are over the life of the chemotherapy. Little wonder it takes a good six months or so to get your body back into decent condition after the therapy finishes. I just feel very lucky that my body has held up pretty well. So I guess at the end of the day – I shouldn’t be wishing for too much. After all I have been pretty lucky.
October 29, 2012 § 7 Comments
Spoke a little too soon the other day….wouldn’t you know it. Metallic taste has come back with vengeance, bones were achy over the weekend, and the usual tiredness set in. Oh well, only one more chemo to go hopefully. I still feel grateful that I have managed the chemo pretty well. I went for a walk today and realised just how unfit I am at present – but I guess that goes with the turf at the moment. Next challenge will be taking the next steps to get on with my life – now there’s another challenge !!!!!
October 22, 2012 § 4 Comments
So today . . . well I’m glad that’s another one out of the way – even the smell of walking into the hospital this morning started to make me feel ill. I think it is all the smells I am starting to associate with illness and chemotherapy. I keep thinking about this time last year when I kept thinking about all the things I had to look forward to with work, travel, relationships etc – how wrong could I have been? I actually do find it hard to think how wrong I could have been – makes me wonder about my own judgement sometimes.
Anyway, the chemo – feel quite sick this afternoon and very tired. I also think I sort of ‘worked myself up’ for this one – anticipating that it would be a bit more difficult. The nurses are all so lovely and supportive and have explained that it is just the build up of the chemo in my system. They have assured me though that it is really good for the cancer, ie it kills it !!!! I’m hoping it has and that it won’t come back – don’t want to do this again. The funny thing about the cancer I have is that it shows signs of both slow and fast growing cancer types so until we get through the chemo and subsequent tests I don’t think I will really know where I stand. And then, assuming I go into remission, the next 18 to 24 months will be important in terms of monitoring how things progress. Hopefully it won’t ever come back !!!!!
So tomorrow the community nurse comes to give me my neulasta and then its predisolone (high dose0 for the next five days – all hopefully for the second last time. At least now there is a light at the end of the tunnel. I’m looking forward to feeling better and getting on with my life. I am hoping that all the good things that I anticipated this time last year, present themselves again.
October 20, 2012 § 6 Comments
This last week has probably been the most difficult of all in terms of how I have managed my treatment – the chemotherapy. I have probably felt sick and tired more than most weeks and my mouth is now very sensitive and sore. I think I have been pretty lucky to escape the constant nausea feeling but this week there have only been a couple of days where I haven’t felt ill. I also think I might be stressing out a bit about it because I wake up most mornings with a headache. I have also been pretty lucky with my mouth which has been in good shape until just the last couple of days. My tongue feels burnt and raw, the sides of my mouth feel like they have been cut and inside my mouth there are ulcers. Even my teeth hurt when I clean them – so much so that I dread having to do so.
On the up side i did manage to go for a couple of little walks this week. It is warmer here now which makes me excited to get outside and into the warm air – a change from the freezing weather of a cold Canberra winter. I suspect that the little bit of extra walking has added to the tiredness.
I have chemo again on Monday and for the first time I am really dreading it. Perhaps what I am dreading is that I know the couple of weeks that follow will likely be more like the last couple than when I started – when everything was a bit easier to manage. I can smell the chemo on me most of the time and especially when I go to the toilet. I dry reach these days just thinking of the smell. It is hard to explain what it is like – just awful and all the m0re awful because now I associate it with the nausea.
Another person I know was diagnosed with breast cancer this week. I thought of her all last night – knowing what it is like in those early days and not knowing what to expect in the future. Her journey is just beginning and I am all too familiar with how scary that is. I was talking to someone else yesterday who told me about a young guy with three small children that died during the week. He was diagnosed with kidney cancer three weeks ago. How is it possible for it all to happen that quickly? How is it that someone doesn’t know they are that sick until they literally have only three weeks to live? Life is such a mystery sometimes. The family of that guy have also been on my mind as have my own thoughts about what you would do if you were told you only had three weeks to live. I decided I wouldn’t try and do too much – i’d just want to help the people I love come to terms with it before I left. I don’t know there is all that more I could do.
Life deals some tough blows.
October 15, 2012 § 2 Comments
Over the last week I have been feeling pretty ordinary. I feel like I have reached saturation point with the chemo and drugs – and just feel sick most of the time. I feel sick in my stomach and in my head – this funny sicky headache thing.
When I started down this track they warned me that the last three chemo doses are likely to be more difficult than the first few. And they are right. I take the anti-nausea tablets and I guess they work for a while but I wake up each day with the same awful sick feeling. There isn’t much I feel like eating – so that’s a struggle. The metallic taste has come back with vengeance. I thought that by drinking heaps and heaps of fluid that I might avoid it, but alas not. I just end up nauseous, feel like I’m eating metal and get up all night to go to the toilet.
After dose four I am also finding that my bones are aching. I was warned this might also happen but until the last dose of chemo I have, thankfully, managed to avoid it.
I’m also having lots of weird dreams – they seem very vivid at the time but I never seem to remember the details when I get up.
So I guess this is how things are meant to be – no point complaining. Just get on with it !!!!
October 7, 2012 § Leave a comment
This is sort of like baring my soul. It’s been a tough, tough year – for lots of reasons other than the cancer. So I guess it is hardly a surprise that I find myself soul searching about what lies ahead and in fact, whether I can have any confidence at all, that my luck will change. They say you make your own luck – well, god knows what I have done to deserve some of the bad luck that has come my way over the last 12 to 18 months. But that’s another story and not the purpose of this blog.
It really should be no surprise to anyone that when you are not well, all the things that you confident about and in control of, seem to fall away. That has been my experience – particularly in recent weeks, and it is scary. While I am totally confident that I will get over this illness it is everything else in my life that I worry doubt – whether I will find work after all this is over; will I be any good at what I do; what will people do if they know I have been sick? does my illness make me unemployable; will I be able to do the things I had planned in terms of travel; where will I end up; will I be able to afford the lifestyle I have – simple but comfortable; will I be able to move location as I have planned??? Lots of questions that this time last year all seemed to have answers and if not then any doubts seemed manageable. This year I wonder and worry about most things. I know how resilient and strong I am – I battled things just as difficult as this in the past. But tat this very moment I am sick of having to be resilient. And as much as I know you make your own luck, I just wish it was all a bit easier. Getting over the cancer is one thing. Getting over the hurdles after it and getting my life back on track is a whole other challenge that I am yet to face.
My haematologist is pleased with my progress and I am half way through my treatment. So for all that I am so very grateful. But I am bald, feel like I am sucking on metal, smell like chemo, have no energy, little interest in things and just plain tired – little wonder my confidence is shot !!! Sus is right. Sometimes you just feel like you want your life back !!!!!