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 30, 2012 § 7 Comments
I noticed that this weeks WordPress ‘Weekly Writing Challenge’ is to finish the sentence, I wish I were.
It got me thinking about how to finish that sentence:
1. Do I wish I were, prettier? Certainly wouldn’t mind the ol’ steroid induced Moonface going away, but only tapering the steroids will sort that one out.
2. Do I wish I were thinner? Well again, steroid induced weight gain is a real problem I’d love to resolve without starving myself.
3. Do I wish I were in some lovely place, like Kangaroo Valley in Australia that I travelled to before I was ill? Well yes, but I’m too sick to travel for a while yet.
As you can see my, I wish I were sentence, seems to be heavily caveated.
It made me realise that really there is only one sane ending to that sentence, for me or anyone else who is facing similar problems (of which I know many of the regular readers of this blog have).
To us sicko’s the only way to truly end that sentence is with the words…not sick.
So WordPress, on behalf of all of us, in this special club of people with horrible/serious/chronic/debilitating illnesses, the sentence is:
I wish I were…not sick
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 27, 2012 § 5 Comments
Well things this week haven’t been too bad. After chemo 4 I felt pretty awful for the following couple of weeks so after chemo 5 I was expecting pretty much the same. Thankfully it hasn’t been as difficult as I anticipated. My mouth is a lot better and while I get nauseous quite a bit, it is currently manageable. I also managed to get through the week taking the dreaded steroid meds – I hate these tablets most of all and for the last couple of days have left them sitting on the bench until I built up the nerve to finally take them. If you don’t manage to swallow them all in one go they leave a dreadful taste in your mouth – so the build up is really about making sure I can get them down in one go. Hopefully that is the penultimate dose – only one more 5 day treatments after the next chemo.
The chemo smell is pungent. It has got to the point where I think I smell all around my house. I think it is going to be one of those smells I never get rid of. God forbid !!!!!!
With the weather warming up my body is starting to feel a bit more energised – at last. I went for one decent walk this week and while it was pretty sedate, felt exhausted the day after. Needless to say I haven’t done quite so much walking for the rest of this week. Although I did do a short one today to go to my daughter’s school fete – it was about my limit though.
I’m hoping things continue to be ok over the next week – with only one more chemo to go I can see light at the end of the tunnel. After that I’ll get a rest from al the meds for a couple of weeks and then the tests will start again to see where things are up to. I’m almost nervous to be too positive. I have no reason to be otherwise but given how the year has played out so far, I’m a bit cautious when it comes to thinking things will work out just as I planned. I guess we’ll see in a few weeks.
Also – got some more hats this week. They really are terrific. I must take some pics and share them with everyone.
October 25, 2012 § 4 Comments
I was having a really great coffee in a little cafe in town and on my way out heard someone call my name and say hello. I have to admit I had no idea who it was but said ‘hi’ and obviously looked sufficiently dopey and vague for them to remind me of who they were. Well even that didn’t click immediately but we started a short conversation – with me madly trying to remember who this person was. Thankfully it finally dawned on me, but not until they reminded me that I gave them their first permanent job some 21 years ago. And so now I remembered. He went on to remind me that he was just out of school at the time and was engaged in the organisation I was in as a very young trainee. On reflection I remembered him as a really nice, friendly, motivated guy and yes did recall helping him out with a job for all those reasons. Anyway in the course of the brief conversation he went on to tell me that he is now doing consulting work in the IT industry, earning an excellent executive salary. He concluded the conversation thanking me for helping him on his way – in fact said that that was the important break in terms of getting him on track for a decent career in the IT industry. I felt very proud and very humbled.
Why is this story so important? Well for me its important because it reminded me that despite the ups and downs of this year (of which there have been plenty), that I have made a difference that counts to someone. For me it was a reminder to look at the good things that happen rather than the things that are bad or don’t work out. It made me realise that the impacts we have we may not realise until years later or may never even know at all – but notwithstanding that, the impact has been made and someone has been touched. It was a sobering conversation at a time when I am thinking abut my future. I think we all have these moments. This is the one I am sharing with you.
October 25, 2012 § Leave a comment
I consider myself to be a pretty well read person. Over the years, I’ve read them all, Camus, Steinbeck, Flaubert, Saki, even Shakespeare – which are actually pretty good reads, once you get past the language barrier.
But, when bad things happen in my life, I turn to my ‘comfort books’. A comfort book is one that you may well have read lots of times and is most likely not one of the great books of all time (well I believe at least one of mine is as it happens) but it’s an easy read, you know it well and it has a quality that makes you feel a bit better when you hear those words, yet again, roll off the pages.
My two comfort books are, The Hitchhikers Guide to the Galaxy by Douglas Adams (a clever, funny and classic book for all time) and The Stand by Stephen King.
The Hitchhikers Guide is held for occasions like deaths in the family, whilst The Stand has been my comfort book through this horrible illness. It’s probably not the best choice of book to read when you have an illness that, for example, in my case anyway, gives you breathing problems, as the story is about a flu plague that kills off most of the humans on the planet.
Because I’m so tired a lot of the time and find it hard to concentrate, I’ve resorted to using the audio version of the book. At first I thought this was…cheating…I’m not sure why I thought that: Having it read to you, is just the same as you reading it yourself. It evokes the same emotions, makes me think about the various characters in the same way, I’ve analysed some of the underlying metaphors used by King throughout the books, etc. So I’ve gotten over my thoughts of cheating by audio and I’m going to embrace this medium.
Why The Stand, why is this my illness comfort book? I thought about this last night as I finished the penultimate chapter (which by the way has taken me 2 months to get to!) and I realised that it wasn’t the main theme of the book, which is good vs. evil (we all love that theme, don’t we). No it was the underlying theme of ‘the journey’: I’ve been on a journey too, not a particularly nice one, but a journey none the less.
The journey in literature is a very common theme, The Wizard of Oz, Don Quixote and so on. Journeys don’t have to be literal ones about travelling a road, they can be metaphorical journeys through life too, of course. I think that I’ve latched onto The Stand because of my own metaphorical journey through illness. The journeys of the characters in the book feel comforting to me, like they’re going through the same pain and awakenings as I am. They can’t literally talk to me, but I feel sometimes as if they are and that has been a help throughout the last 2 months. Thanks Mr King.
Tell me if you have any comfort books?
October 23, 2012 § 13 Comments
When I was in the hospital the other day, I was looking around at all the obviously ill people, and I thought, dear god I would
NEVER IN A MILLION YEARS
have thought I’d become one of them, one of those ill people, people who look ill and weak, who hobble along because they are in pain, or have weakened muscles, or have tubes coming out of their noses, etc.
But I have, I’m one of those ‘ill people’ you see on hospital visits: Sometimes the whole horrible episode just HITS you!
Then, the other morning, just for a couple of hours, I could almost taste better. It was like a brief glimpse at what I was, before…this ‘thing’ hit me, this alien thing, this disease, this interloper. It is not me, it is not who I am, but it feels sometimes that I am becoming it.
I have had symptoms for almost a year now and been very unwell since late April, which seems such a long time, but now I’m ready for better please.
Bring it on, enough is enough.
…Watch out non sickos…if it can happen to me, non smoker, fit and healthy, 30 years vegetarian…it can happen to you