November 2012
Thanks jan
As you as said DEFINITELY I expect a full and detailed report of the Saturday lake happenings. It is written
Hugs
Geoff
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April 2013
I am sorry that I have not posted a reply to this post as I have not been reading all on this site lately . This must have been an incredibly difficult time for you and now that a half of a year has gone it still must be . I am sorry about your loss and that your friend is gone too .
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November 2012
Hello,
I came to realise early in the piece with Pieter that I was working along side the medical staff providing palliative care, at first that scared me but then realised that people diagnosed with GBM are already (once diagnosed) under palliative care. Essentially it is another form of caring.
I agree that getting equipment, papers and funeral in order, even if you only start the processes are a great help. Equipment such as the hospital bed, incontinence aids, food supements for when taste buds change or when food becomes difficult to swallow.
Power of attorney is great but also make sure all papers are in order (for after) as power of attorney stops the moment someone passes away.
Funeral arrangements, Pieter had always indicated a cardboard box and BBQ, but as he progressed Pieter asked if he could have music, then asked about poppy service (having been in defence force), and as Pieter wanted the changes I worked with the funeral director to make sure Pieter got his wishes.
Pieter also wanted to stay home, which worked well for him. My children assisted with Pieter' care, with my daughter was with Pieter and I on his passing.
You need to do what you believe is the best for you and your family, all of us here understand what you are going through and we can provide information on what worked or did not work for us, but you have to decide your next step. We can only support you in your decision.
Our thoughts are with you.
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September 2012
Hi Nat
Not been on the Cancer site …kind of lost the hope and incentive.
We have a nurse come in Mon, Wed and Friday for showering, however today she had a bed bath (pain in her stomach and bowel for the last 3 days so moving her is difficult and with her energy being low for 3 days - a new stage?) Also palliative care nurses once every 2 weeks with options of coming when and if required. So I am surprised with the amount of support out there
Lorraine continues to deteriorate she is now very quiet in our day to day communication she cannot form any words an occasional yes /no after significant repeated closed questions , she has lost the remaining strength of her legs so toilet is an issue Incontinent pants are used 4-5 changes during the day . Her appetite is good. Most of the day she just sits and I feel for her boredom (well my perceived sense that she is bored as the tumour and/or drugs may place her in a ‘stupor’ (I can’t think of a better word to best describe her state)
We used to get out each day with me pushing her around on a wheelchair but this may not be obtainable in the future until I can get the pain management under control and her energy increases
Speaking with a friend today who will conduct her funeral.... that talk reopened my awareness of where Lorraine is and again feeling of grief to the surface once again – her death/her going/leaving. The friend will come around Friday and I am feeling I do not want to go through this - this talk and recognition of a new and closer stage
Ps
If you are doing full/part time caring for Dennis be aware that there is a carers allowance approximately $110/ fortnight you can claim from Centerlink (as well as another carers payment - but that is related to any other monies you might have coming into your accounts I did not bother as I am on compassionate leave from my work and still getting a salary). Register as soon as you can as any payments are only applicable from the day you register as intending to claim. The form must be also signed by doctor/palliative care nurse as you being the carer of Dennis. So speak to your palliative care nurses for initial advice
Hugs
Geoff
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September 2011
I have recently heard of the antidepresant drug Clomipramine being used to treat brian tumours. My understanding (with what I have come across on internet) is there is hope for treatment?
Some extracts from the internet-
By Professor Geoffrey Pilkington BSc PhD CBiol FIBiol FRCPath
"Clomipramine: A Breakthrough For Brain Tumours?
Originally published in May 2003 icon, this article looks at the potential of using chlomipramine, a tricyclic drug already widely available, to treat brain tumours or brain cancer. Since it was written we have covered research in Cancer Watch which concluded that using chlomipramine with the drug Temozolomide could improve the performance of Temozolomide and enhance survival times."
"In more than 30 years laboratory-based research into the biological nature of brain tumours, few developments have excited me more than the seemingly bizarre finding that an antidepressant drug may provide an effective way to combat this resistant group of cancers."
A BBC 4 programme explores some history http://www.bbc.co.uk/iplayer/episode/b013xsm1/Treating_Tumours_Old_Drug_New_Tricks/
Anyone else have experience or insight?
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October 2011
Thanks for the greetings.
I've since found out a little more info after the CT and MRI. I will have a colonography the day after tomorrow as the CT images weren't very clear.
At this stage the cancer is confined to the lower rectum and is in a few of the nodes.
I'm scheduled for surgery on the 25th and will be having a lower rectal resection.
I've been doing a lot of reading and a lot of talking to others who have been in a similar position. Had a counseling session and I am doing ok. Just starting to get a little nervey about the surgery as the date gets closer.
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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
There is a trial of a vaccine being undertaken at phase 2/3(?)
(which from an old posting in Feb 2010 by the original research doctor indicated that some GBMs have a particular protein and this vaccine has been designed for and so far have had success at starving some of the tumour - my expression so maybe wrong terminology) I believe that the protein could be in up to 40% of GBM sufferers
Pfizer was a leader in the trails but returned the rights of rindopepimut (CDX-110) the therapeutic cancer vaccine,in Sept 2010, to Celldex Therapeutics because the drug is “no longer a strategic priority” for the company, raising questions about the viability of the program.
So there is a trial at least being undertaken, and from my perspective, the results look mixed but still only infer some longer life, and only for some people with a tumour with the protein.
Being America I guessing that if it does get up and running then it will be expensive. There may be some hope but for who it would be suitable, whether it works and whether it would be available in time .....
Is any one has insights into all this?
Regards to all
Geoff
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July 2011
8 weeks have passed since my partner passed away from brain cancer and I can totally understand when you say it seems to have gotten harder. Just when you think you are managing a 'tad' better, such as driving in the car alone with minimal tears and bang your hit by a 5 metre wave and your back at the drawing board of lost and so sad. I have been there and thought I was pulling it together and right now I am down and lost again. I don't understand how it gets easier. So I am sorry I do not have any words that can help you process and cope, I think we are all individual and support from family and friends is our best avenue. If you or anyone else has any advice on how to cope please share. What has worked for you? What hasn't worked?
Keep strong, take pleasure in the little things, live each day to the fullest and smile and laugh at the many good memories 🙂
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