Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Dear all, Thanks for all your kind words and I have been chilling although I don’t think I was paranoid, it is just the way I am, an Aries. Anyway living in the UK doctors do not unfortunately offer information freely without asking for it and as I mentioned before I haven’t up till now been taking that much interest as I had other important matters taking precedence, however the six year court battle has now finally ended and the fact my consultant mentioned starting chemo in March, has made me sit up and take notice. I had a bone marrow thing done about 4 years ago, which held no specific relevance to me at the time, so I have no details. I have had fever about six years ago but that I still get occasionally but not that often, night sweats have been constant for the last seven years, sudden tiredness I get regularly, calf cramps for which I take Quinine for and is very successful and my lymph glands seem to go up and down like yoyo’s mainly under my arms and in my neck and occasionally in my groin. My consultant has told me that my Chemo will be in tablet form, at a medium strength but he has not mentioned any other medication such as Rituximab which I read a lot about hear. I feel I need to see my consultant again before March just to enlighten myself more but I feel quite ignorant about the whole matter and would be glad of some guidance to what I need to be finding more out about, so I can feel more confidence in what he is saying and how the quality of life is going to be once I start my medication, as I have to bear in mind my single parent status of my eight year old daughter; and some forward planning if possible. Hope you can help me get my ignorance reversed. Marcus > > Marcus, So sorry about the loss of your Mother. That on top of > > of everything else was a lot of stress on you at one time. I know > > Neve has been a blessing to you during this time. As says, > > stay cool. When I first found out I had CLL I went paranoid. Then found > > out it is a very treatable thing, and the more you learn, the more > > comfortable you will be with that fact. > > > > B. " The #! Man " on this list will be sending you some questions to ask > your doctor > > I am sure. > > Mainly: post some of your blood counts on here if you have them - you > > can ask nurse at your doctor's office to send you a copy. It's good > > to keep a few copies of things as you go along for reference. > > Have you had any biopsies? > > > > Symptoms? Night Sweats? Fever? > > > > Just ask anything you have question about- - the folks on are > > very knowledgeable, and eager to help. > > Barb N. - Arkansas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Marcus _ I agree that is the one to help you develop an initial list of questions. In the meantime, start collecting copies of every medical record you can get your hands on (films, labs, etc., too) and start a file.You will start to see patterns and be able to recognize things in the notes or counts which aren't right which will lead you to your own questions. I also encourage you to get a tape recorder and tape sessions with doctors. It's hard to process everything being said and even harder if you are trying to take notes and think ahead at the same time. As for your daughter don't leave her out of what's happening to you. While the conversations, obviously, need to be age appropriate, if you don't talk with her about your medical condition she will know something is wrong and assume the worst. I just retired after teaching elementary school for 30 years, and I had many students over the years who would suddenly fall apart accademically and/or socially. When we talked it often was because a parent had been ill and because the parents tried to " protect " the child from worrying by not telling him/her what was happening. The child assumed the worst - my parent is going to die and no one will tell me. Talk to your daughter about possible side effects as you become more aware of what you are facing and give her a role in helping you through your treatments. It doesn't have to be anything big - bringing you water when you need it so you don't get dehydrated (include the reason so she feels she is doing something important to help), reading to you or playing your favorite music when you need to rest, putting cold towels on your forhead, simple household chores (again age appropriate and with the goal of involving her, not making her see you as a burden), pet care, whatever. The " what " doesn't really matter. It's giving her the feeling that she isn't being shut out, or that you aren't telling her the truth, which only leads to fear. I think there is a pamphlet available at UCLA about this subject.If I can find a copy I sill snag one for you and you can let me know how to best get it to you if you are interested. Don't be afraid to line up friends to help, also - both with your responsibilities and taking your daughter on for awhile. You will rest better knowing she is in good hands and she won't end up feeling overburdened and overwhelmed. I think you will find that your 6 year court battle was good preparation for doing battle with the medical field (unfortunate that is works that way, but it seems to). Best of luck to you. You have a double challenge ahead of fighting the cancer and raising a too soon to be teenage daughter. Both take a lot of perserverence and energy. Don't worry about " losing it " once in a while - we all have. Pat -- In , " marcus.whitaker " <marcus.whitaker@...> wrote: > > Dear all, > Thanks for all your kind words and I have been chilling although I > don’t think I was paranoid, it is just the way I am, an Aries. > Anyway living in the UK doctors do not unfortunately offer information > freely without asking for it and as I mentioned before I haven’t up > till now been taking that much interest as I had other important > matters taking precedence, however the six year court battle has now > finally ended and the fact my consultant mentioned starting chemo in > March, has made me sit up and take notice. > I had a bone marrow thing done about 4 years ago, which held no > specific relevance to me at the time, so I have no details. > I have had fever about six years ago but that I still get occasionally > but not that often, night sweats have been constant for the last seven > years, sudden tiredness I get regularly, calf cramps for which I take > Quinine for and is very successful and my lymph glands seem to go up > and down like yoyo’s mainly under my arms and in my neck and > occasionally in my groin. > My consultant has told me that my Chemo will be in tablet form, at a > medium strength but he has not mentioned any other medication such as > Rituximab which I read a lot about hear. > I feel I need to see my consultant again before March just to > enlighten myself more but I feel quite ignorant about the whole matter > and would be glad of some guidance to what I need to be finding more > out about, so I can feel more confidence in what he is saying and how > the quality of life is going to be once I start my medication, as I > have to bear in mind my single parent status of my eight year old > daughter; and some forward planning if possible. > Hope you can help me get my ignorance reversed. > Marcus > > > > > > > > > > > Marcus, So sorry about the loss of your Mother. That on top of > > > > of everything else was a lot of stress on you at one time. I know > > > > > > > > Neve has been a blessing to you during this time. As says, > > > > stay cool. When I first found out I had CLL I went paranoid. Then found > > > > out it is a very treatable thing, and the more you learn, the more > > > > comfortable you will be with that fact. > > > > > > > > B. " The #! Man " on this list will be sending you some questions > to ask > > your doctor > > > > I am sure. > > > > Mainly: post some of your blood counts on here if you have them - you > > > > can ask nurse at your doctor's office to send you a copy. It's good > > > > to keep a few copies of things as you go along for reference. > > > > Have you had any biopsies? > > > > > > > > Symptoms? Night Sweats? Fever? > > > > > > > > Just ask anything you have question about- - the folks on are > > > > very knowledgeable, and eager to help. > > > > Barb N. - Arkansas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Dear Marcus, Like you I am a Brit with CLL but I live in Italy. I just wanted to say that Pat's advice to you about how to involve your daughter and your friends is absolutely spot on. You don't mention whether your friends and acquantances know about your CLL, but for about a year after I was diagnosed in 1998, I had great difficulty in talking about it with anyone except my wife and immediate family; I was fearful that others would think, " Poor bloke! He's got cancer " , and worse, that their words and the expressions on their faces would show that they expected me to kick the bucket in short order. Above all, I didn't want to be the object of their pity. However, after I reached an inner peace with the my situation, I was able to open up with our friends and acquantainces in our small town. Since then, my wife and I have had enormous moral and practical support. Cheers, Colin Fraser, 72 Dx 1998, Unmutated, Trisomy 12, 2002-2005 Chlorambucil and Prednisolone. Since Nov 2007, Fludarabine/Cyclophasamide/Dexamethasone, Rituximab just added (at third treatment cycle). Quote Link to comment Share on other sites More sharing options...
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