karenl

Dear Don Hoping fervently that Lucie improves soon. May the love and support that you have shown all on this message board return to you a thousand fold..... Love Karen

Hey guys, Does anyone remember a couple of years ago, when the lovely betplace (Betty) posted about a cartoon that someone had put together about their mother's battle with lung cancer? Well, I was browsing in my little local bookshop down here in Perth, Western Australia, when I came across a book called "Mom's Cancer". I picked it up, and sure enough, it was the same cartoon - he managed to get it published, and it turned up half way around the world!!

Lots of love coming to you both, Karen

Hi Deb, and welcome. I'm sorry to hear about your Mom's diagnosis. Yes, cancer and its treatments can cause significant alteration in a person's cognition. Among the things that can cause mental changes are dehydration, elevated blood sugar, hypercalcemia, brain metastases, toxic build-up from the tumours themselves, reaction to medications, and the list goes on. Have you discussed these changes with your Mom's doctor? She probably needs to undergo some tests to try and determine what is going on, and whether it is something that can be easily remedied. All the best, Karen

That's beautiful, Val.

Hi Shannon, and welcome. I'm sorry to hear about your step-dad, and sorry that you are feeling so confused about his prognosis - that's lung cancer for you! You are right, the statistics for lung cancer survival are not very inspiring, but the thing to remember is that there are ALWAYS exceptions to the rule, and it is next to impossible to determine who is going to get lucky, and who isn't. I agree that it is unusual for doctors to predict a survival time of 4-5 years. With cancer, they tend to suggest that if you have survived 5 years, then there is a good chance you have beaten the disease, and could go on indefinitely. At the end of the day, the doctors don't really know how long your step-dad is going to survive - there are plenty of people on this forum who have lived alot longer than their doctors 'gave' them, so try not to get too caught up in the numbers game. Easier said than done, I know. I'm sure you have found in your research, that once lung cancer has metastasised to distant organs, the chances of long-term survival are greatly reduced. However, I have read that lung cancer is sometimes curable if the only evidence of disease is resectable tumours in the lung and brain, so perhaps your step-dad's doctors are thinking along these lines. As for the depression and anger, I can only imagine that it is a completely normal reaction to devastating news. I reckon I'd be angry and depressed too. We were very lucky in that Mum remained positive and upbeat most of the time - it would have been alot more difficult for all of us if she had let it get her down. It must be very hard for all of you to deal with. Professional counselling, support groups, talking with his doctor, and/or medication may help a little. I'm sorry you've had to join us on this journey, but at least none of us are doing it alone.... Wishing you well, Karen

Dear Peggy I was worried that something like this was happening after your last pm. Please know that I am sending lots of love and positive thoughts your way. I hope that Mike's pancreatitis can be brought under control successfully very soon, and that you are able to draw some strength from this community that loves you so.... Karen

I agree with all that has been said above, and the publicity given to breast cancer often makes me angry too. I know only too well that lung cancer is the biggest killer....but I can understand too the high profile of breast cancer - I think the latest figures I read had the incidence being something like 1 in 7 women will develop breast cancer in their lifetime. Those are pretty appalling odds, and I personally am grateful that there has been so much money and research poured into this field, so that survival rates are actually very good. So I guess you could argue that maybe its time to start focussing on the other cancers whose prognosis is not so good. We approached our local Cancer Council last year about acknowledging Lung Cancer Awareness day, and the reason they gave for not doing any publicity campaigns is basically that there is no early screening test that has been shown to improve survival, so there is no point in raising awareness about the disease !! The reason they like to flog breast cancer is that it may encourage women to check their own breasts and go for mammograms which may pick up the disease and they can be treated and saved. I think if they were able to find a way of picking up lung cancer earlier, so that it could be cured surgically, then we might find it would receive a bit more attention. Now, why nobody seems to be busting their butts to do that, I don't know...... Just my thoughts, Karen

Dear Lori I understand well what you are going through. Mum was very confused and cognitively altered in her last several weeks, and then almost completely unresponsive in the last few days due to the medication. The few times when she did rouse she was in so much pain, that it was unbearable to watch. Val is so wise - take her advice and look for every single 'mom moment' you can find. They will help to sustain you later on. This is such a heart-wrenching part of the journey - know that you are not walking it alone. Love Karen

Gail, so sorry to hear this, and I'm sorry that hospice wasn't what you'd hoped for. Wishing you peace in the days ahead. Karen

Dear Michelle I am so sorry. My son was born 6 weeks after Mum's diagnosis, and my sister's baby was born 7 weeks after Mum died. We understand your grief. Sending lots of love and support your way, Karen

Dear Carleen You and Keith remind me of my parents. It will be one year next week that Mum died. My Dad is surviving.....it's hard, and it hurts, but he is surviving. You can too. Love, Karen

Hi Gail We were told basically the same as Linda. Mum was very confused and distressed the last 6 weeks of her illness. She did have brain mets, but scans indicated that they were continuing to reduce in size, so it was more likely the 'disease process' that was causing the cognitive deterioration. It's heart-breaking - I hope you find many more 'dad moments' in the days to come. Much love to you and your family, Karen

Hi Brandie So sorry to hear about your Mom. The early days following diagnosis are so devastating. It is a good idea to get a second opinion if you do not feel confident in what the doctors are telling you - even if only to have confirmation that they are on the right track. When Mum was diagnosed, she also had a single met to a rib, and was otherwise in excellent health. About 18 months later, brain mets were discovered, and she had 10 sessions of WBR, and no chemo during that period. Mum handled the radiation well at the time, but was extremely fatigued for several weeks after, and I think that chemo and WBR together would have been way too much for her to take. Of course, everyone is different, but I would guess that if your Mom is severely SOB, then they may think the two therapies together would be too hard. I would like to see her SOB being dealt with a bit more promptly. All the best with your search for answers. Everyone is different, and deserves an individualised approach to their illness and treatment. What is right for one person will not necessarily be right for your Mom, but do keep seeking explanations so that you are all comfortable with what is being done. Saves the heart-breaking "what-if's" that can plague you later on. Karen

Katie , where would we be without you? Thank you for everything..... Karen

Dear Carleen No words will come, just lots of love. Karen

Thank you Don. I am glad to know that you and Lucie are able to be a support for Teri's family. Miss her alot! Karen

Carleen and Keith, So very sorry to read this post. Much love to you both. Karen

Bill and Rob, So very sorry to read this news. I hope you will be able to find some comfort in knowing that you were such wonderful and strong advocates for Etsuko. No one could have done more. Please accept my heartfelt condolences. Karen

Gwen, I'm sorry to hear about the situation. When Mum was released from hospital, she was not really mobile either. We had an appointment set up with our hospice provider and they came out to the house a couple of days later, but in the meantime, we had already determined the aids and appliances that Mum needed, and hired them.....things like wheelchair, walker, commode etc. The cost was very reasonable, if money is a concern. Your hospital should be able to tell you whether there is a similar service in your area. In the interim, can your Mom call on relatives or friends to help her? If your Dad's mobility is poor, then she risks hurting herself, and him, if she is trying to cope with this on her own. It's an awful situation, and I think its appalling that you haven't been provided with more assistance. All the best, Karen

Love and support coming to you both, Carleen. I'm so sorry that things seem desperate right now, and I hope that something more can be done to help Keith..... Karen

I think I get it, Kim. You said alot of the things that I have felt over the last couple of years. I even believed at times that it WAS easier for Mum than for us - and I feel stupid now for even thinking that! I think Mum really felt the loss of control - and she got heartily sick of Dad and Jana and I presenting new ideas for treatments, or different pills she could take that might help, or reasons for her symptoms. Mum fought with everything she had, but when it became obvious that things were progressing quickly, I think that part of her just wanted to let the disease take its course, but we wouldn't let her. And I feel bad about that now. I would never have imagined that we could survive losing Mum, and yet here we are, albeit merely a shadow of our former selves. I know that she wanted us to go on and be happy, and I hope that one day we will get there..... Lots of love coming your way. Thank you for posting. Karen

Dear Linda You know your Mom better than anyone, so her ability or otherwise with regard to decision-making is something you understand better than us, but Randy's words hit home with me. We all know that some treatments work well for some people, and not at all for others. I know that I often look back and wonder if we'd done things differently, or in a different order, would it have made a difference to the outcome? Sometimes people find it easier to be indecisive, rather than select a course of action only to find that it was the wrong one. And let's face it - the consequences of making a 'wrong' decision with regard to cancer treatment can be pretty catastrophic. I posted a while ago about a condition called 'learned helplessness'. It is a psychological term that has been used to help explain why some people stay in abusive relationships, and why concentration camps were able to flourish in WWII. I think it may also be quite pertinent to some people following a cancer diagnosis - particularly advanced cancer in which the prognosis is grim. People become conditioned to thinking that it doesn't matter what they do, they will not be able to save themselves, so they do nothing. Just a thought...... I know its hard for you. Wishing you and your Mom all the best. Karen

I have been dreading this post . Strength and comfort to Teri's family. I am so grateful for the opportunity to have known Teri. Love Karen

Hey Shar - "Aussie aussie aussie, oi oi oi!!" (only you will understand that!!) Great news, Karen