Hi Sharon That's wonderful news - so great to hear someone's beaten the bastard disease. My mum in law has just found out about Zometa which worked for another lady with numerous bone mets - she's in chatting to the onco as we speak so hopefully will be another option for her Hope you're able to plan a bigger than ben hur chrissy - just being able to spend it with family and friends normally would be fabulous I imagine!! take care Zoe ... View more

I concur.  The forum has been a lifeline for me - my MIL is quite open in discussing her cancer and what the future holds (or doesn't!), however, it feels selfish to talk about how I'm feeling etc when she's dealing with such an overwhelming issue. The forums have been good to help put things in perspective and ramble on aka vent. What makes me so sad is that cancer leaves nearly no one untouched these days and most people you talk to have been affected by it, with such difficult battles fought or ahead of them. My MIL is in a very dark place at the moment, her horse of 20yrs in the family was euthanased on the weekend after complications from surgery to remove a benign tumour (such cruel irony for her pet to have cancer too) from its intestine 2wks ago. Then at oncology today they want her to have a bone scan cause new hip pain suggests cancer is running rampant... my hubby has taken her off to a monet exhibition for some mental therapy this afternoon. So... after rambling on again, I wanted to reiterate Kate's msg above and take care to all. Zoe ... View more

Just a quick note to update - I went into the above website and received the below response: Thank you for contacting DKMS Americas and for your interest in registering as a potential life-saving marrow donor.  YOU might be the ONE person to save a life!  We only test individuals in the United States. Please contact your country ... View more

PS....  forgot to add that pal care have home based services that focus on maintaining quality of life, not the end of life (which is what the hospice is there for) - which might be helpful. We also found out just recently about the ACT Carers association - there should be one in your area... We haven't had much to do with them yet but they are there for the carers as an emotional, practical and financial support.  I don't know if your hubby would be receptive to talking to other bowel cancer patients?  Which might help if he could talk to someone in the same boat as him?  I think the cancer council can put you in touch with other peers.  My mother in law went on one of those look good feel better workshops and was initially apprehensive, but ended up really enjoying it as she 'clicked' with another lady who had a rare type of cancer (the rest of the ladies were breast cancer patients) and felt she really benefited from talking to someone else facing the same issues she is. She also had her first lot of treatment in Wagga and we stayed at the Cancer Council's Lilier Lodge for the 3wks - it was such a great support meeting other cancer patients and making friends with people in the same isolating situation as yourself.  One lady was there with her mother who was very difficult to be around and I hoped it helped her to be able to come down after dinner and sit with other carers to chat etc. Take care Zoe ... View more

Hi Smeggles It is hard to know what to say when you are copping it from all angles.  I don't know if your husband was verbally aggressive before his diagnosis or if his personality change has been since then? Please keep visiting this site, as I've found it essential to my mental health and greatly helps to reduce your feeling of isolation. From reading other's experiences, a lot of people have a personality change (which is completely understandable given the traumatic issues they have to deal with plus large amount of drugs and/or chemo toxins in their body). My mother in law who has terminal lung cancer (and not a smoker) was not a nice person prior to her diagnosis and her disposition improved slightly, however, we are walking on egg shells as her moods are so unpredictable. Your message sounds like your husband is still very much in denial, so bringing in the palliative care team will probably make him explode.  We didn't know what to do in the early days and how she would react to different issues that cropped up(diagnosed xmas last year) .   I don't know if if was the right way to go about it or not, but we scoped out / 'researched' things on our own before bringing them up with her.  She has a little bit of medical knowledge from being a vet's receptionist, so you can imagine how that goes. We talked on the phone to the cancer council a fair bit, who were very helpful, plus talking to the staff at the oncology unit.  We also rang the palliative care team (the onco unit should be able to give you the contact details if you don't know how to get in touch) at Clare Holland House and went down to talk to someone.  At first he was very dismissive of our concerns and sounding very bored, until we'd told him that yes, she had a referral to pal care but had kept cancelling the appointment as she felt she wasn't ready.... yet had had a couple of hospital stays. Another hospital stay in the interim was the turning point for her - an oncology social worker turned up and surprisingly she was very receptive to this beautiful lady - taking most things on board and we felt we were now able to broach the sensitive issues. Pal care have been on board for a few months now and the nurses and doc are absolutely wonderful - when she's on the syringe driver during treatments they pop out every day and she's been queue jumped at emergency since then, so she very much appreciates their help now.  She went back to her home last week and insisted she was fine to live on her own....  we didn't feel we could stop her doing this and have as many support mechanisms in place as possible in case something happens.  We think she can feel in herself that her independence will be shortlived (she has bony mets in her right hip and left shoulder) so at some stage she'll be back with us or into the hospice.   Sorry to rabbit on about my probs, which are quite small now compared to what you're going through.  I felt (and still feel) like I'm being pulled in so many directions trying to be everything to everyone and failing miserably.  My husband is a contractor and doesn't have any leave left, so I've used up some of my sick leave while she was us having treatment.  I did it more for him so he didn't have to worry about getting her to and from treatment etc, but she has 'nasty' days and is very unpleasant to be around, so feeling like 'what's the point'?.   One thing everyone keeps telling us is not to take things personally and ignore any nasty things that are said as they are most likely coming from being in pain/discomfort.. however, it's still very hard to take it on the chin. I've found the palliative care staff to be more understanding and supportive of the emotional side of cancer than normal onco staff - please talk to the folks on the cancer council helpline or the pal care mob in your area. Thinking of you and please feel free to email if you feel like venting.  My first few posts on here were a rambling mess of rants and raves while I was trying to cope with everything. Take care Zoe ... View more

Thanks for the advice on the website, much appreciated.  We've only just found out about the Carers program in the ACT - a great idea and we've started stumbling over how we're going to manage to keep working while looking after hubby's mum.  Hopefully we can get some advice on how best to manage.  I'm fortunate that I've got 5mths sick leave that I can take as carers leave (I think), but my hubby is on a contract and has used up his sick leave and has about 2wks holiday leave left. His sister has just about used up her leave too so information about the employed carers website is very timely indeed The home based palliative nurses have started coming out, which is a godsend as she had some breathing probs just before chemo started and it avoided a trip to A&E. Unfortunately another stint in hospital but this time she was put in the onco ward and the care by nurses, docs and social worker etc was absolutely fantastic!!  The social worker gave us all sorts of information for her and us on practical things eg Centrelink, oxygen at home etc etc and popped her head in when she was in having her 2nd cycle of chemo the other day. We all went and saw My Fair Lady last night which was great - her life is revolving around treatment and medical appts at present.  It has been a hard road emotionally  the last couple of weeks as she's reached the point where she can't safely live on her own (the breathing attacks are random at any time of day & night) and the doc doesn't want her to drive anymore. She also made the decision to stop work so her life has turned upside down.  Her employer is a good friend of 20yrs+ and is happy for her to work casual hours when she's well enough to, but the pain has escalated out of control, even with substantial increased dosage of meds.  The pal care doc is coming out this morning to review her pain meds and she said she's come to the conclusion that she'll have to be doped out of her eyeballs to keep on top of the pain (up til now she's tried to keep as alert as possible/only taken minimum pain meds to take the edge off). Whoa, my fingers are getting away from me so better draw to a close before this becomes war and peace again. Best wishes to all and for any women out there who haven't yet done a Look Good Feel Better workshop (www.lgfb.com.au), it is highly recommended.  My mum-in-law had a wonderful time on Tuesday at the workshop and said she enjoyed being able to relax around other women in the same boat as her. Take care all. ... View more