September 2009
Mary - after your last treatment do something as extravavgant as you have the energy for. Since you are a foodie, if you feel like eating, have a nice lunch or have cocktails (or mocktails if you don't drink). Buy yourself a piece of celebratory jewellery!
I found that the day I had my scan to clear me and the picc line removed was such an anti-climax as my husband just said "well glad that's over" and we went home. Not his fault - he just didn't get it. I was hoping for something to mark the end of that time and the beginning of dealing with the next phase, but that never happened.One good friend did buy me a lovely book that I had been wanting.
I didn't speak up for myself and have regretted it ever since.
One day when I was having treatment, 2 women who were both finishing treatment for breast cancer that day, brought champagne, strawberries and cheese for everyone and hung beautiful butterfly mobiles from their treatment bags. It was wonderful and so very positive!
Maybe celebrate is the wrong word , I'm not sure. But make it significant - you have survived an awful part of your life that none of us asked for but you endured it and made it to the other end.
And if you feel like chocolate - eat it!!
Samex
... View more
September 2009
While I have previously commented on this blog , I can't help but agree with Vanessa. My care was wonderful and my ongoing care has been exceptional from both my oncologist and my surgeon, let alone the oncology nurses in the cancer clinic at my local public hospital where I had chemo for 6 months.
I genuinely feel for those of you who had awful experiences but in response to your experiences with palliative care, I have had 2 friends die in the past 4 years in different parts of NSW. While we do not have the wonderful facility that is in Melbourne, Calvary Hospital in Sydney and its pain management staff went above and beyond the call of duty for my friend.
Perhaps what we should be advocating for is improvements in facilities as a matter of course that would be of benefit to all in our society. Just a thought.
Samex
... View more
September 2009
Just something that came to mind when writing for the writer's group and the thoughts expressed by others at times- perhaps some thoughts ideas on what happens when chemo (or radiation) finishes?
Where do you go and what do you do when you have to try to be "normal" (there's that word again) after treatment.
Some help on the expectations of ourselves and those around us would help people and they may then not find themselves in the semi-lost situation I have been in.
Samex
... View more
September 2009
Loralee lots of hugs from me too. I have a colonoscopy coming up and even though I had clear scans a week ago, I am still starting to develop the nerves a bit.
Amanda - how do you do reiki long distance. I'm intrigued. It's one of the avenues that I am hoping - once I find the time - to pursue for the neuropathy in my feet.
Samex
... View more
September 2009
I really like these images of how our illness makes us confont who we really are.
I'm still working on that but lately I am starting to feel more positive about a number of aspects of my life. I even said "no" today at work because I was just too damned tired to do any more extra stuff!
I beleive that I am less judgemental these days and accept poeple with all their flaws, particularly when you don't know what their story is. Who knows why that person is walking soooo slowly down the street and holding you up? I now try to take more time with people and take each day as it comes. This doesn't always work of course, but we can but try!
Some interesting thoughts Teacher Mum,
Samex
... View more
September 2009
Hi guys,
Harker that is the first time that I have actually had some of my thoughts and confusions communicated so well. I , too, had no debrief - just a hug from my oncology nurse and he, very kindly, said that he didn't want to see me again.
I thought I was the only nutter who thought that it might be safer and more predictable being back on chemo after it was all over. The relief of course was enormous but the question of what do I do now was never addressed.
Mary, my treatment (for bowel cancer) also made me very weak in general but ever so slowly the srength returned . Never quite as strong but I can go up stairs again! I am 18 months out of treatment.
Take care,
Samex
... View more
September 2009
Hi Julie,
my greatest fear is to have to face it all again. I have the enormous respect and compassion for those of you who done this "thing" twice or even more.
I also agree with how the negatives can sometimes become positives. While there is nothing positive about cancer, the fact that you view your life differently and maybe live it better is something that I no longer take for granted.
Julie I really don't beleive you are strange; if you are then we are all there with you. What this forum has shown me is that what I am feeling and experiencing is common and that this allows us all a little hope.
Samex
... View more
September 2009
Hi Ruby,
I echo Harker's thoughts and agree with the idea of you joining the writer's group.In the writer's group it is also therapeutic to share thoughts with those who never pass judgement on how you are feeling and can often empathise with your current situation.
I am 18 months out of treatment and I would also recommend that you keep up with your yoga. I also was quite advanced in my yoga practice until surgery and 6 months of chemo put an end to that. Now I attend classes that are of a much lesser "standard" but because my attitude has changed I feel that I now have much greater benefit from them. I have an awesome teacher who worked with me brilliantly when I could hardly stand up let alone do yoga!
I am also a high school dance teacher and it is amazing how you can teach dance standing still. The neuropathy in my feeet meant that I am only recently able to jump and balance on one foot.
I am still working out my new normal but give yourself some time. I am older than you -52- so I can only guess how much harder the physical stuff is but I guess I have learnt that at least we are here to experience whatever our new normal is.
Take care and try the writer's group,
Samex
... View more
September 2009
Has anyone experienced the neuropathy associated with (in my case) oxalipalitan? Bowel cancer treatment
I am 18 months out of treatment but still have numb toes (especially when I walk or do yoga)and my hands have the same symptoms as carpal tunnel.
I feel that the alternative to these side effects is of course much less desirable but I was wondering about how others have experienced and/or dealt with this side effect.
Samex
... View more
September 2009
I had a conversation this morning with my husband who has some difficulty understanding why I'm not always positive about my cancer.
I am lucky that I am still clear 2 years down the track and I like to think that I acknowledge that and I have great hope that it will remain this way.
What I tried to explain to him is that my reality has shifted and while there is a great deal of hope, at times I get very down and very scared of the future.My reality now is that my future is uncertain and I want to live every day and take advantage of every opportunity as it presents itself.
This is my version of positive rather than the happy face that I always had while in treatment.This version of positive is linked to hope but also linked to how our reality has changed.
Jules like you, I need to be able to address/confront all of the emotions that run through us, not just the "happy "face.
Great conversation,
Samex
... View more