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hockeyma

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Posts posted by hockeyma


  1. Cheryl, I too wasn't on this board until November 2006. I have no idea what happened - however I would be frustrated also to be only offered a brain MRI every 18 monthes. Sometimes getting help from the medical profession and advise is like pulling teeth unless you are firm and strong with your intentions. My husband had alot of cancer and with alot of his treatment we had to push for what he got - he probably lived an extra couple of monthes because of that. This board is helpful cause it gives you experience as well as treatment patterns and plans to use, summarize and take to your medical team when discussing treatment and planning. If your health is getting worse I do so hope that you will continue to use this board. My husband passed at the age of 42 and I being the same age plan on staying on this board even though I have no real purpose to now - in order to offer my help and experience to others in my area and that were experiencing the same circumstances as my husband.

    Heather


  2. Hello, I am from north of Toronto. This site is wonderful. Although my hubbies outcome was not so fortunate I have found both during and after a great deal of support, friendship and understanding on this site. It is the best thing that I could have had to learn from. I have just recommended this site to a co-workers wife who has just been diagnosed also. All the best and congrats, Heather


  3. I went through this with my husband's sister earlier on....after that she didn't dare. She told him best place for him was hospital - about 2 monthes before he passed. He was scared and wouldn't leave. We finally convinced him to come home - and other than a 2 day stint home is where he stayed til he passed away. If your mother and brother are capable of caring for your father with the assistance of hospice than go for it. Someone that sick should have their wishes. And if his brothers and sisters don't like it that is really their tough luck. Not trying to be mean. But.....they are not living your mom and brothers life - nor your fathers. Heather


  4. Yirol, I don't think there is an issue about flying with stage 4 lung cancer. I believe it would be more the clotting of superior vena cava vein or if there is thrombosis of juglar vein that would be the issue - Gerald had both. So he couldn't go anywhere. We did consider driving 2-3 hours at a time to May in Rochester - but they got him on chemo quick here and it seemed to be good at the beginning. People go to Buffalo apparently which is close - there is something there. Heather


  5. Yirol

    Your dad is really sick. But I totally agree - if you can stabalize him on the right chemo without making him too sick then you will win some quality time with him. I don't know what hospital you had your discussion with this dr at....I am assuming Princess Margaret? I questioned alimta and avastin and was never told that either were not available. One does not work well with cancers that have a large mass as they cut off blood supply. As far as radiation - I know they did do radiation on Ger cause of all his pain - but you know what - we wanted it so bad for him it just seemed after that he had less pain but he went right down hill. I wish you the best and keep up the fight. You are doing the same that I did with questions and all - I seemed to have gotten a better response and more respect than you did. I think they either need to explain to you your fathers condition more thoroughly via graphs pictures or whatever - and I think that they need to treat you how they would want to be treated themselves if he was their dad. Have you got the ct scan discs....if you get them you might be able to see yourself why they might be talking this way and performance level 3. Need any more advise or another Canadian to talk to let me know - I am here for support. Heather


  6. I am so sorry you have lost your mother. She put up a really good fight and your support to her was amazing. Always remember no matter how hard it is that she is in no pain or shortness of breath and that will be watching over you and your children as you watched out for her. Hoping that the kids are ok. Heather


  7. I believe she should have a bone scan. Now as far as her scalp - just before Ger started to lose his hair his scalp really hurt and was tender. If she hasn't lost hair yet this may be a cause???....

    Best wishes and positive energy your way. Heather


  8. I have a 13 year old who held his fathers hand in our dining room (where the hospital bed was) when he died. In the first few monthes of Gerald's illness Sean had all the positive going to beat this disease attitude in the world. As Gerald became skinnier, sicker and needed to go on oxygen Sean intuitively spent more time with his dad but at the same time spent time with his friends and led his life. I would talk to the kids in the car as we didn't talk doom and gloom at home. I spoke to Sean and asked him did he think his dad was getting sicker, he replied yes - and asked "do you think he is going to make it". It broke my heart to tell him that I didn't think so - cause I was then breaking my own denial. Sean replied that he had figured this out and come to terms with that. Many children are more intuitive than we may think - he suprised me - that is for sure, give them choice and ask them what they want to do and how they feel and let them know that it may get tough. That is my reccomendation. Maybe it isn't the right thing but I don't regret it...and I don't think Sean will later in years either. I am not sure about a 10 year old - my niece is that age but she wasn't around all of the time. She didn't really understand the oxygen or why Uncle Gerry was so skinny....just told her that the cancer was making him very sick. Also afraid of telling her much more lest she slipped and got into the dying conversation when talking to him. I am sorry you have come to this stage. It is really hard and I still keep an eye on my 13yr old and 16 yr old for any abnormal behaviour and always emphasize the stories of others who have lost parents to accidents and heart attacks that at least we were lucky that we did get to spend extra time with him even though he was sick - we had that time to say good-bye. Best wishes, Heather


  9. This is my first mother's day without my husband and it was harder than I expected - that is weird huh! I guess it was cause Ger always made sure that he got to the craft store sometime in the morning of the day to get me a unique little gift from him and another from the boys. Then we would always have a family dinner with my mother who is thankfully still here. I am grateful to have a wonderful friend who arranged with my 13 year old last night to do a visit to the same shops in our village with him for me. And then - we went to my sisters for dinner. I shed my normal hidden tears in the truck today alone coming home from the garden centre after buying my mom her traditional hanging basket. Things will never be the same, yet life does move on. Fathers day won't be so bad as my husband was always away on his "guys week-end" fishing trip. This year the guys are throwing a tiny urn of Gerald's ashes into the Ottawa river. I have arranged that the kids will go to work with me at my store so the other employee's may have the fathers day with their fathers and that will help us take our minds off our woes too. I am so sorry that you all never had your mothers to celebrate with - for that I am lucky to be a mother and to have a mother. Heather


  10. I am sorry for everything that you are feeling right now. I know how you feel when part of you wants her to be freed from this awful disease while another part of you wants to keep her with you and for her to be all better again. I have lost my father to heart, my brother to meningitis and my husband to cancer and I can tell you that there is no easy answer to any of this. Take every day that you can and enjoy your time with your mom to the fullest and know in your heart that you have done all that you can. PS - always remember too that your mom even if she does leave you will be in your heart forever...and you know that she will be in a better pain free place...and she will more than likely let you know that too when it happens whether it be now or a year from now. All the best. Heather


  11. Missy

    Thanks for the update. I hope that you come to the right solution for your mother. There are also some adhesive pads that you can buy for the tailbone that will help if the donut isn't. At least they help with the rub. Also one of those foam eggcrate mattresses is good too. If you get any free home care services and get a hospital bed there is a special air filled mattress that could be supplied also. Your mom is a real trooper. Keep up the strength and all the best. Heather


  12. Well tonight was our first mixed slowpitch baseball game without my husband here with us on the team. Boy did we all feel a definite sense of someone missing (plus the beer fund sales were down). Seriously though, there are so many firsts that we all have to go through when we lose someone. I found that every significant first - such as like this ball game tonight - is really hard. My stomach is in knots 1-2 days before it all. I put on my pennant with the ashes in it tonight though and let the team know that he was here. We all got through it. We live in a small town and everyone at that diamond tonight that had played ball for the last few years felt it. It is funny how insignificant we might feel to be when we are alive and it is not until we are gone like this that we realize how important and valuable we were to so many. Gerald is up there now catching those fly balls and snagging those grounders. Heather


  13. Ativan - usually put under the tongue - helps with anxiety. Ger had alot of anxiety once he had a problem breathing. We found when he took the ativan that he could breath better again. I would ask about that. Also note - that even thinking about doing something - like climbing the stairs - would cause the anxiety. I still think to this day that before we kept him downstairs the reason that he couldn't breath at the top really wasn't the climb but the anxiety about thinking about it. Best of luck and sending positive energy your way. Heather


  14. Yirol,

    I am in Ontario also, even though my husband's battle was not successful my goal is now to help others local to me to get the best treatment available. I am not sure where you are located but I am assuming close to Toronto. We are an hour and a half north of Toronto and our hospital had only one real oncologist also. We were told that Gerald could not have radiation. He started chemo immediately which was good - he had alot of cancer in him to begin with - and that probably bought him some time. However....after I pushed some issues we got referral to Sunnybrook - who also have a lung radiologist and a lung oncologist - each have a resident doctor working with them and their own nurse. They were excellent in my opinion. They are also easier to get to than Princess Margaret. Be careful of the drugs that your dad is put on. Once Gerald got the referal to Sunnybrook we discovered that radiation in some areas was an option but he would have to wait 3 weeks for the chemo drug to clear from his system. There are some chemo's that can be done at the same time as radiation. If you can't get into Princess Margaret - try Sunnybrook - their website does say that they will see people quickly...how true that is I don't know. I also know that there is a centre in Buffalo that people go to - but apparently it is between $3-$5 thousand dollars....to see if there is anything else that can be done. Another hospital should know of this. Gerald couldn't travel because he had thrombosis in his juglar vein and vena cava vein when diagnosed. I don't know much about Iressa - I didn't even ask as in the states I know it has been replaced by Tarceva. Tarceva is in Canada a third line option and to take before that you have to have private coverage - which we did - so Gerald took that as a second line. So double check that he would be covered for Iressa by the government. I also want you to make sure that you check into the available home care that is free and covered by the government with 4th stage lung cancer. Usually called a "community care access program" - your dad should qualify for a nurse to come in and check him a few days a week - ie blood pressure, temperature and general well being. As well if he ever needs oxygen - stage 4 with metastes does usually qualify for free. Also you can get a nutritionist and a physiotherapist at some point covered to come to your home also. If Gerald had been able to travel we had considered going to the Mayo clinic. One of the head oncology nurses at our local hospital worked at Sunnybrook in oncology for quite some time and she told us that often people would go over the border and come back with the same treatment plan and reccommendation....but you never know....I guess that is one of those would have, should have, could have things. Gerald and I had alot of hope but he had too much and things never worked out. Sorry for the long speech....but I want to help if at all possible and feel free to private message me with any and all questions that you may have. Heather


  15. Grace - sorry you can't find your cell phone. Now try this - it worked for me with a shoe. Ask Carlton to show you where it is. You never know - something might lead you to it. I have thought the same about mine though- I have two little video clips of Gerald at a party in the summer - this leads me to realize that I am going to need to tape them off onto a cd or something. Heather

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