June 2011
Hi wren,
Let me start off with wishing you love, light and peace on your journey.
As Salior mentioned, there is often this idea that you have to be strong and positive then you'll be fine. Almost like if you think about any alternative other then that you'll make it come true. So we outwardly appear strong, smile, but really we can be eating up inside by the what if it doesn't work? what happens if this is it?
I've found that being strong is easy, admitting fear can be hard. facing mortality even harder. But I'm finding (and still working on it) that by coming to a realisation that we're all here for a short time, be it months, years or decades, all that really matters is now. And now what I value is what is important to me, rather than the objects that seemed so important before. I guess that is the blessing of cancer, it makes us revaluate what is important in our life.
With chemo, I would recommend going into it from a view of loving life and wanting to live, rather than fear of death. In a recent study (the scientist in me comes out 🙂 ), by Colagiuri, B in 2008 found that those who expect the worst outcomes with chemo have the highest levels of nausea. While those who expected a better outcome had lower levels of nausea and a better quality of life.
I can also highly recommend a "Quest for Life" program as a place to find yourself, learn some simple tools for your health and wellbeing as well as being surrounded by the most beautiful people.
If your looking for a support group, then I'd also recommend that the people who make it up are more important then what type of cancer they have. The SAN hospital has some very good groups (if you're in sydney).
I hope some of this was helpful.
Peace be with you,
U can
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May 2011
Hi I am traveling a similar path, a few steps behind, still a roler coaster of a ride. Operation 3 Feb then the dreaded news of the GBM grade 4
Hugs for your journey whereever you are today
Geoff
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May 2011
Hi Governor
You are going through a lot just at the moment. Cancer is an awful disease as it, and the side effects of the treatment can change a person totally. It certainly messes up the finances.
You may need to consider financial counseling and it is worth talking to your superannuation people and to centrelink about his and your options. It will fall on you however, as it is clear that your husband at present cannot do this. You need to have some support yourself and it is definitely worth ringing the cancer helpline 13 11 20 and talk to them about your issues. It might be worth contacting Carer's Australia as well - www.carersaustralia.com.au/ .
All of us in this area find that at times we need some counseling - have a talk to your GP because you can get this on medicare both for yourself and for your husband. It is also worth talking to your oncologist - if a person is terminally ill, i.e. if their normal prognosis is that they will not live for longer than a year, then they can access superannuation tax free. If they live longer than a year, or if they respond to new treatment, they do not have to pay it back.
Hope this helps
Regards
Sailor
I keep sailing on in this middle passage. I am sailing into the wind and the dark. But I am doing my best to keep my boat steady and my sails full. Arthur Ashe
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May 2011
thank you so much guys..we're still receiving emails, letters thru post, text messages and phone calls from people, honestly we don't know..and we're happy and overwhelmed, specially my beloved wife, for all these supports, prayers and thoughts..but yesterday i received from anonymous message telling specifically that my "sick" wife should not be granted the PR visa because she will "rip-off" the australian money!..again, i just thank him/her for the time he/she spent thinking of us ;-)... i explained that all the necessary expensive medical treatment and surgical procedures were already done and paid by our own pocket, and help from other individual and community BEFORE the granting of this PR visa..no more expensive treatment can "cure" my wife!..and even if my wife will gonna need this "free health access", it will be very minimal and my wife's tax contribution when she was still healthy was more than enough to cover her medical needs, if ever she's gonna need more palliative care..funny thing, out of curiosity, i ask the centrelink people if my wife can access any benefits, and she was told to "wait two years" before she can get benefits!!!..i just hope and pray that my wife is still with us by that time...
just sharing to you what's the latest..but still, we are very grateful to all of you guys..thanks
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April 2011
Hi Sailor,
Oh I love a good argument/discussion.
Some people suffering with cancer will try anything to fight and win over it. If it makes you feel good and you believe in it then that is ok for you. Just keep an open mind and the realisation that when it comes to cancer people can be desperate and I don't think they care about the meaning of words such as 'energy'.
Getting pernickty about the meaning of words when we all know they are talking about treatments that are hard to describe to anyone who isn't open to them.
Critisize those that are trying to rip off the desperately ill, and promise cures that aren't certain.
I too suffer from lack of energy and am still recovering, so I am careful with execise and good food that provides energy and prevents dehydration. We are all inviduals and so our bodies may respond differently, it can be mentally draining just to arrange all this.
Cheers Kitty
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April 2011
you could get them to colour you in with highlighters, whiteboard markers and different coloured tippex. photos?
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March 2011
Hi pebbles,
I am so sorry to hear of your husbands diagnosis. It is such a terrifying time. My husband was originally told he had a grade 2 brain tumour in Dec 2009 but a year later it had progressed to the grade 4 GBM. So we are about 6 months down the GBM path and he is not doing well. I think the fact he had the other tumour has meant his survival time has not been as good as some others.
I remember being so frightened as I started to discover all the info on GBM in the beginning. I just wanted to hear stories of people surviving and I HATED hearing stories of people dying. Just remember that everyone responds different to the treatment and there are some fantastic stories of people still strong 3 or 4 years after diagnosis. They are constantly trialing more treatments and one day there WILL be a cure!
I am only 29 years old and I feel so ripped off to be robbed of the love of my life and the father of our son. I have struggled in my head with the thought of loosing him for so long and have felt so desperate and like I was clinging on to any hope - and that was very exhausting. A few months ago it became clear that he was loosing this battle and strangely it was a relief to stop fighting. It is still so heartbraking and painful though but at least now I can take each day for what it is and stop freaking about the worst happening, because the worst is happening! I guess what I am trying to say is that your life will never be the same, BUT don't waste so much time freaking out that it stops you from living in the moment and appreciating each day especially while hubby is still quite well. Much easier said than done mind you!
I wish I could tell you that it is easy and all will be ok, but the reality is that it is so freakin hard. BUT, in saying that, there are many wonderful things that happen during a journey like this. You realise that the world sucks, BUT also that there are so many wonderful people living in it. You have moments where you feel you can just not cope anymore, BUT then you find a strength somewhere deep inside to get through that moment. You feel so mad at your partner sometimes because you just want 'the old him' back, BUT you get experience a connection and type of love and care for your partner that is so powerful.
I am at the other end of my journey, so I hope I havn't brought you down with the morbid tone of my letter. Hubby and I don't have much time left, but YOU TWO DO! How ever you cope with this, just trust in yourself that you are doing the best that you can.
Be kind to yourself and LOVE LOVE LOVE your man. Lots of cuddles are essential!!
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August 2011
I have googled cancer myths and there are several. On other sites I use I've read about "cancer cures"e.g. asparagus,citrus ....I forget the rest . I'm sure it all helps but some do all this and then lose the battle .
I know how to eat healthily but it takes effort and planning and I have become a bit lazy . I should be walking daily,but am waiting for better weather. It's probably here most days now. I rarely drink alcohol and don't smoke. I used to smoke and am glad that smoking is not linked to my cancer.
From early 1995 till late 2002 I was fanatical about healthy eating and was happy but it was difficult when I was out .I wish I had the self discipline today.I didn't go for fad diets or over the top stuff,just absolutely no junk food and normal good food from all food groups.
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March 2011
Hi Bindi, It is great that it will be your own stem cells as it is a quicker recovery process. If you follow the same treatment regime as me you will have 6 months of chemo, which I could still function o.k with. I continued to work part time. Towards the end you get more tired but generally manageable.
Then they harvest the stem cells, then transplant them. The time to put the stem cells back takes 30 minutes.
I could not believe the process, it really is incredible! I had my transplant at Peter Mac, the staff were fantastic!
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