Re: Re: Marcus - New Member

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marcus i am a recently diagnosed patient of 6 months and like you i am also a single parent of 2 children, i am in stage 0 at the moment with my white blood count just above normal. I do try and read this site every day as i do learn quite a lot of information. I do not need treatment at the moment therefore i havnt told my children anything, i am struggling to come to terms with it myself and i feel if i burden my children with it at this stage they will struggle to understand and worry unnecessarily until i do need treatment. I hope you treatment goes well. allison"marcus.whitaker" <marcus.whitaker@...> wrote: Dear all,Thanks for all your kind words and I have been chilling although Idon’t think I was paranoid, it is just the way I am, an Aries.Anyway living in the UK

doctors do not unfortunately offer informationfreely without asking for it and as I mentioned before I haven’t uptill now been taking that much interest as I had other importantmatters taking precedence, however the six year court battle has nowfinally ended and the fact my consultant mentioned starting chemo inMarch, has made me sit up and take notice.I had a bone marrow thing done about 4 years ago, which held nospecific relevance to me at the time, so I have no details.I have had fever about six years ago but that I still get occasionallybut not that often, night sweats have been constant for the last sevenyears, sudden tiredness I get regularly, calf cramps for which I takeQuinine for and is very successful and my lymph glands seem to go upand down like yoyo’s mainly under my arms and in my neck andoccasionally in my groin. My consultant has told me that my Chemo will be in tablet form, at amedium strength

but he has not mentioned any other medication such asRituximab which I read a lot about hear. I feel I need to see my consultant again before March just toenlighten myself more but I feel quite ignorant about the whole matterand would be glad of some guidance to what I need to be finding moreout about, so I can feel more confidence in what he is saying and howthe quality of life is going to be once I start my medication, as Ihave to bear in mind my single parent status of my eight year olddaughter; 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 questionsto 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>

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hi this is for pat, i just read your reply to marcus on his situation and noticed that you worked with children. I am currently in stage 0 being recently diagnosed 6 months ago. Fortunately i do not need treatment yet so i havnt told my children anything. I am a single parent of 2 children who are both very sensitive and i feel that if if tell them at this stage it will worry them and will have a great affect on their living their normal everyday lives. I just wondered what your opinion was and if i was doing the right thing. allisonpkenn16 <pkennedy16@...> wrote: Marcus _ I agree that is the one to help you develop an initiallist of questions. In the meantime, start collecting copies of everymedical record you can get your hands on (films, labs, etc., too) andstart a

file.You will start to see patterns and be able to recognizethings in the notes or counts which aren't right which will lead youto your own questions. I also encourage you to get a tape recorder andtape sessions with doctors. It's hard to process everything being saidand even harder if you are trying to take notes and think ahead at thesame 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 youdon't talk with her about your medical condition she will knowsomething is wrong and assume the worst. I just retired after teachingelementary school for 30 years, and I had many students over the yearswho would suddenly fall apart accademically and/or socially. When wetalked it often was because a parent had been ill and because theparents tried to "protect" the child from worrying by not tellinghim/her what was happening. The child

assumed the worst - my parent isgoing to die and no one will tell me. Talk to your daughter aboutpossible side effects as you become more aware of what you are facingand give her a role in helping you through your treatments. It doesn'thave to be anything big - bringing you water when you need it so youdon't get dehydrated (include the reason so she feels she is doingsomething important to help), reading to you or playing your favoritemusic when you need to rest, putting cold towels on your forhead,simple household chores (again age appropriate and with the goal ofinvolving her, not making her see you as a burden), pet care,whatever. The "what" doesn't really matter. It's giving her thefeeling that she isn't being shut out, or that you aren't telling herthe truth, which only leads to fear.I think there is a pamphlet available at UCLA about this subject.If Ican find a copy I sill snag one for you and you can let me

know how tobest get it to you if you are interested.Don't be afraid to line up friends to help, also - both with yourresponsibilities and taking your daughter on for awhile. You will restbetter knowing she is in good hands and she won't end up feelingoverburdened and overwhelmed.I think you will find that your 6 year court battle was goodpreparation for doing battle with the medical field (unfortunate thatis works that way, but it seems to). Best of luck to you. You have adouble challenge ahead of fighting the cancer and raising a too soonto 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" 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. Thenfound> > > > 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> >>