Do I or Don' I ?
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August 5, 2009 at 1:14 pm #22193jlcramMember
I have to say that at first, I was scared to death. The thoughts of what might happen engulf any other thought.
To this day, I am still watching and waiting. The problems that I have do not compare to the problems many people have had to deal with. While my counts are low, I have seen lower from people who contribute to this forum. Will the day come when I have to make tougher decisions? I have no doubt. For now, I am happy to wash my hands more often which is the very least I can do to ward off infection of any kind which at this point, I am very likely to contract. Do I worry? YES I WORRY!
While trying to forget all of this, in the back of my mind I wonder when will I get sick? When will I need to be hospitalized? When will I need some form of treatment as described by many of the people on this forum? When will MY family have to deal with all of this? I read alot of posts and feel for everyone. I too appreciate all of the responses. While we trust our doctors, wisdom is infinate here. So many people, so many experiences, so much wisdom and advice from people who have been where I and many people have been. For your willingness to share, Thank You
It has been almost a year since I was told that I may have leukemia. To this day, I don’t know what is wrong. I just keep watching and waiting. Do I still work? Yes! Do I still go to public functions? Yes! Have I become more aware and worried of what can cause the infection that could make me sicker? YES!
Over the past few months, I have tried to forget this, I have tried to go back to normal life. I think I have done ok, BUT, that worry is ALWAYS IN MY MIND. What is going to happen? When will it happen? When will I need some form of treatment?
Again as I said, these are the least of my worries at this point compared to others, but I still worry.
I have 3 children. While 2 are well on to adult life, I still have 1 who just turned 14. I have a 1 grandchild who I want to see grow into adulthood. I have decided to do whatever I can to make this the longest path I can take.
At this point, I dont feel like a prisoner, I feel like I just need to combat whatever comes my way, for my wife, for my family and for me. So, I have decided to bow to a few of the things that could make me sick. I will do whatever I can to fight this.
xz
I worry
August 6, 2009 at 12:15 am #22194Mary4MikeParticipantGood for you, jlcram!
Washing your hands and carrying hand sanitizer is the least we can ALL do. It becomes second nature, like wiping your shoes off when you come in from the rain.
Cathy:
Taking precautions won’t make you a prisoner, but it could make a big difference if and when your counts are low. You are still in shock over all of this, but it will get easier.Hang in there.
August 9, 2009 at 11:47 am #22201eveMembercathie
even those of use who are lucky enough not to have major medical problems take certain precautions when it comes to living – that does not make us a prisoner
don’t bury your head in the sand
good luck
eveAugust 11, 2009 at 9:45 am #22204katydidMemberThanks for your comments Eve
I am not burying my head in anything – I am simply stating that I am not going to become a prisoner of practices that are so restrictive that I may as well carry around a lepers bell shouting ‘unclean unclean’I will die as I have lived – with my head high and my voice strong and to hell with the consequences
Cathie
August 11, 2009 at 7:09 pm #22206drinaldiMemberCathie
I have tried not to respond to some of your posts because I know how difficult it is to accept the reality of your condition. However, I am insulted by your last comments and feel I must reply.
My husband was a strong, healthy man who was diagnosed during a routine blood test. His last eighteen months were spent accepting the diagnosis and the lifestyle changes it involved. His time at the end included medical treatments as well as transfusions on an almost daily basis. It was not of his choosing, yet he did so hoping it would extend the life he loved. Although he was willing to try anything he certainly did not deny the seriousness of his disease.
He used common sense in his approach to avoiding germs but, at the same time, did not isolate himself from family, friends and eight wonderful grandchildren. To compare necessary precautions to carrying “around a leper’s bell” is beyond comprehension to me and others on this site who are mature enough to follow precautionary guidelines.
He died differently than he lived. His voice did become weaker and his head held not quite so high. yet he was the strongest man I have ever known.
He was loved more than can be expressed here and has been missed every moment since.
Think before you post. Everyone here is vulnerable. We are not here by choice.
I wish you the best.
August 11, 2009 at 11:15 pm #22207Hunter BobMemberI too was taken aback by Cathie’s ‘attitude’ about the disease. It actually made me chuckle a little and say to myself "she’s not sick enough yet". I have faith that she will soften her hard attitude as time goes by.
My Bob is one of the strongest men known to family and friends – hunting, fishing and exploring the wild bush of Canada, guiding others to remote fishing lakes, etc. Today drying a dish is almost more than his strength can allow – but he is strong of heart and mind. We all fight to live life to its fullest, trying to keep on doing what we want to do – maybe with a few revisions, but enjoy every minute of every day.
The reality of this disease is, you are not in control, but you do your best to stay on top.
~ Hunter Bob’s wife
August 12, 2009 at 1:36 am #22209katydidMemberi didn’t mean to insult you – as you say – coming to terms with stuff is hard and I guess I need to leave this forum and find somewhere that I can talk to people who have what I have – I am not lashing out at you -and I am untried in the face of death so what I say is to be understood in that context – my heart is breaking for my family who have to deal with this much more than it is breaking for myself – and for people like yourself who have had to go through something this terrible. Thank you for responding to me from your heart and your wisdom and not from your anger – it is something I am not very good at yet
With my apologies and my thoughts for your grief
CathieAugust 12, 2009 at 2:32 am #22210drinaldiMembermy intent was neither to upset you nor to have you leave this forum. this is where you belong and we will willingly be here to support you. i was the caregiver and, as close as i was to the disease, i cannot speak as one who had it. my frustration came with wanting you to learn from the wisdom here and combine it with the natural spunk you possess. i believe the combination of the two will bring you success in the fight you have ahead.
your age and health give you a wonderful advantage with mds. there are many success stories here and your doctors seem to be guiding you in the right direction. it’s frightening but it can be done.
each and every one of us was in shock when we first joined and most of us had never heard of these blood disorders. but this is the place we belong. the information is invaluable and the support system unwavering.
stay with us. you belong here. hopefully you will eventually be cured and move on. but right now, we are here for you.
Prayers and love…….
August 12, 2009 at 4:43 am #22211Laurie HMemberThis forum is indeed where you should be! In my experience it is the only place you can find people that are also dealing with the ups & downs of MDS on a daily basis. Often times our families just do not get it—we look normal on the outside –we’re a little more tired, have to go to the Dr. a lot, have transfusions but we don’t necessarily look "sick". When we don’t look sick, in their eyes, we are not. I don’t know whether it is denial or just not wanting to deal with it period. When I try to talk to friends or family and they are not reseptive I turn to the forum. I have even found that the Dr.s do not always know what it is really like to have MDS. They know how to treat it but they don’t really have answers when you ask them how to deal with getting through each day the best we can. All of you live the MDS life everyday, either yourself or a loved one and bless you for being involved and supporting them. It always makes me feel better when I browse through the postings–sometimes I post a reply and sometimes not but at least I know that I am amoung people who know and care.
Bless you All.August 12, 2009 at 4:54 am #22212EstherMemberMy goodness gracious!!! Or maybe that should be "my goodness, how UNgracious" are some of the comments directed at my daughter in this thread. I found the "she is not sick enough, yet" particularly hurtful. Surely people deal with this in different ways, clearly Cathie is doing that (possibly our staunch British ‘stiff upper lip’ heritage or more likely her courageous self) – but surely she should not be castigated for not dealing with it in a way which some of you clearly don’t approve?? This surely is not the American way is it? I have always found American friends to be of a deeply compassionate nature.
If you have read this far let me tell you of the dreadful 10 months we have just experienced. I have been through all the trauma of breast cancer including surgery and radiation therapy and I’m on an anti cancer drug for the next 5 years. In the middle of my treatment my husband, Cathie’s Dad, had a stroke necessitating three weeks in hospital and subsequent surgery. I am 75 and he is 78 and we are so very grateful that we seem to have survived thus far. Throughout all of this Cathie has loved and supported us – as too have the other 3 children – but a lot fell onto Cathie and Graeme’s shoulders simply because we live very close to each other. So, we have a short breathing space and then Cathie starts to feel ill and you all know the diagnosis. The family is shattered all over again. I combed the internet to find this site and was so delighted with the information we have been getting. Cathie is at the beginning of her journey – surely on here there is a carer or sufferer who can cast their mind back to the beginning of the struggle and perhaps find that their wife/husband/partner said "I am going to fight this thing!!" – which is basically what my daughter is saying.
I see that she has posted above me and I applaud her constrained reply because believe me I felt most upset and bordering on angry about the way she seemed to be being treated. Personally I hope she stays with this site because I believe that Eve may not have been speaking for everyone as she claimed when she had her ‘chuckle’! Overall it’s a great place to come and my philosophy in my life is that none of us have a right to judge others – let us leave that to a Higher Authority shall we??
Thanks for listening, if you have.
Regards to every single one of you – and the greatest empathy in your trials and your grief.
Renée
August 12, 2009 at 5:28 am #22213Laurie HMemberRenee, Thanks for your post and my thoughts are with you and your families in dealing with all of the illnesses.
I don’t think anyone was deliberately trying to be mean to Cathie—atleast I would hope not.
MDS is treated so differently through out the world that I have read about treatments & procedures that I have never heard of since I began treatment in 2007 (had it about three years prior). Most of those questions have to do with infections—like don’t eat shrimp, don’t eat fruit without peeling, wash hands alot, don’t take certain antibiotics that kill of the good bacteria in your stomach. ect. It never hurts to wash hands but no one has ever metioned any of these other things. In reading these posts I have come to believe that it is just part of the protocol in each part of the world that ideas come from. Not to say that any of them are good or bad. Anyway, Best wishes to Cathie and your families.August 12, 2009 at 5:41 am #22214EstherMemberThank you so much Laurie – that was beautifully put and I truly appreciated your words.
All the very best as you struggle with your own illness – and you made a point that I hadn’t considered – maybe there are different ideas and varying emphases wherever in the world we live.
I can assure everyone that Cathie doesn’t live in squalor, quite the reverse, and I eat with relish any of her wonderful cooking that I am offered
Just that we had not realised the need for all the extra precautions because we had not been told – and we all adhere to the usual hygiene precautions that health conscious people the world over adhere to!!Thanks again Laurie
August 12, 2009 at 11:07 am #22215Hunter BobMemberI believe that our initial reaction to Cathie (at least for my family) is her attitude seems to be that we are crumbling beneath this disease, don’t have the guts to fight it, and are doing really stupid things like washing our hands to stay out of harm’s way of infection. Words are powerful things – they don’t often convey our true feelings.
My heart goes out to your family for all the trials you’ve been through and now – yet another family member is stricken with sickness.
I hope Cathie keeps battling her disease as hard as her words have come across to many. You have experienced our hurt through words in this posting — we are only to trying to help Cathie realize she must concentrate now on doing all she can to take care of herself for her family’s sake — no matter what it takes. It’s not demeaning, it will just help her keep going.
My best to all of you. Hunter Bob’s wife
August 12, 2009 at 12:31 pm #22216maggiemagParticipantHi everyone. I don’t think I have posted on this site as yet, but feel compelled to respond here!
I think I understand everyone’s viewpoint on this topic. I don’t really believe that anyone was trying to be mean. Hunter Bob’s wife stated her initial reaction to Cathie’s post, and I admit I had the same reaction.
BTW, I AM a patient and not a caregiver on this site. I was just diagnosed with early MDS; I am 61(not as young as you, Cathie!) and have RA with 5q- chromosomal clonal defect that hasn’t evolved enough yet to see which blood malignancy I will get. I also, like Cathie, found it a bit disconcerting that most who seem to post here, are caregivers and not the actual patient. I find that a little frightening, actually, especially at first. But when you realize that it is usually the elderly that get MDS, I guess it is understandable that they aren’t the ones posting. So I got the impression that she really wanted to hear about how we cope, but from the patient’s perspective. So I *do* get that.
Anyway, and sorry this is so long ;-), I am so sorry that your family has had to deal with so much adversity in such a short time, but I do think this is where we will get the most accurate information. No one was suggesting that you all live in squalor and don’t use the proper hygiene! As you research further, you will find that it is *standard* care to EMPHASIZE strict handwashing when the patient has low white counts and is immunocompromised. As you read further, you will find mention of the special neutropenic diet. (I am also an RN folks.) Knowing our *numbers* and taking these precautions is just common sense. Dealing with this disease means dealing with all the feelings and fears, but also the practical facts like our counts. It is ALL very important, in my view anyway. Cathie may feel differently about some of this stuff as the disease continues. That is what was meant by saying she just wasn’t sick enough, or at least that was my impression.
I hope I haven’t added fuel to the fire, but just some random thoughts by a new patient!
There is also another message board that I have found with the Leukemia and Lymphoma site. There aren’t as many people there with MDS though.
Cathie and family……….if you haven’t already received it, I highly recommend calling the MDS Foundation who sponsor this site, and ask for the free 100 page booklet on MDS. It is extremely informative, and supports a lot of what has been said here.
Good luck to all of us in this stupid fight!
MagsAugust 13, 2009 at 4:50 am #22217EstherMemberThank you HunterBob’s wife and Mags for each of your messages which, like Laurie’s I so appreciate.
I certainly can’t post here for Cathie and I hope she will come back to read the latest replies – but ‘hard’ would never describe her, she would not deliberately hurt any living thing and I think she did say earlier that her intention was never to insult anyone. Whichever way you look at things the bottom line, to me, is that it is all about grieving – either for those deeply loved and lost, or for the loss of one’s health, lifestyle, plans for the future etc etc.
My position is a little different from others here in that this is my dearly loved daughter – and I’m sure, thinking of the ages of the posters here, that many of you will have adult children who are very precious. It’s devastating when one’s child has a life threatening illness and you yourself are getting old. It is not the normal pattern of life and death that we expect is it??
Thank you again to all of you who have given such valuable help and information – and Mags I hope that Cathie will read your message!! I should say that she is getting fantastic care from her team of specialists here at Auckland Hospital she is kept informed every step of the way – and perhaps one day they will also instruct her to wash her hands etc more frequently too (that’s by way of being a bit of a joke folks!!! – just to lighten us up!!!)
Regards to all,
Renée -
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