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Contributor
Posts: 64
Registered: ‎05-06-2015

HI Goldie.

 

1 thank you for what you do.  This is a great idea..

 

2. I posted a  long list of hints for a newly diagnosed patient sometime  in   late May or  early June for my first post. It included hints of how to deal with loss of appetite, that she might need a ride to her treatment, and many many more. , It took me over an hour to think of what I wanted to say so it was a labor of love and was about a page and half of info derived from my years of being a cancer advocate for the  Leukemia and Lymphoma Society..  It was not a good post - the person I posted it for responded that I was giving her too much information.   She was going to her rfirst chemo in three days after all. While I did not expect accolades, I did not also expect that I was not only not  helpful but that I was annoying her..  It sort of struck me like someone asking for money and you giving them a $10.00 bill and they want a five and 5 singles so they are a bit annoyed. .Many responded to the other gal but no one mentoned to her that the hints would/might help in 3 days.. So I slunk away for a bit.  Then decided to ignore the incident and come back because I believe in what I am trying to do.  I decided to cut some slack because the key point is we all need support when dealing with cancer.

 

3. I was a stage 4 NHL.  When I was diagnosed the cure rate for small B cell NHL was 30% so the prognosis for me  was not terribly good.  But a new drug,(13 - 14 years ago) Rituxan, changed all that and the cure rate now is up to about 65%.

 

4. Like some survivors I have survivor guilt.  Why did I survive over the person sitting next to me? So I try to make a difference in other people's life to "pay" for the gift of life I was given.

Contributor
Posts: 64
Registered: ‎05-06-2015

Sorry I should have added two other pieces of info:

 

1. The importance of LLS is that they are dedicated to the blood cancers - one of which is leukemia.  Leukemia is the # 1 cancer in children so I hope all of you see its importance. .LLS funds research for blood cancers, has wonderful literature explaining in layman terms each of the blood cancers, provides financial and emotional support for blood cancer patients, and a host of other things.  They have several fund raising events which are fun.  Survivors are very welcome and they make a big deal of us.

 

2. I am compiling info from a person who has walked the walk point of view in hopes that it can be published by LLS if it turns out to be good/helpful enough.  The horrible problems of the 5 days (after a chemo) of  prednisone (a steroid that  NHL patients take as part of our treatment.  It is dreadful.)  The 5 - 6 hour Rituxan drip before you get your chemo  R-CHOP.. . The medieval like experience of a bone marrow test (wierd) but they need to see how well you are producing blood - it is a blood cancer after all,  Getting some bone marrow doesn't hurt but it is wierd.  There is intense pressure near your tailbone - you are lying on your tummy with nothing on below your waist.  It feels like you have a 500 lb. something on your back and your body sort of  arches in defense.  While you  have your Rituxan they take your vitals every 1/2 hr, so you get a lot of attention.  If your body is tolerating the Rituxan they speed up the drip a bit.  My Rituxan took about 2 hours. How cold you get from the Rituxan - but they have cozy blankets for you.  But I must admit that I prefer knowing what is going to happen, what to expect, etc.  Sone people don't I guess.  (My fist word was why and I expect my last word to be that too.)

Respected Contributor
Posts: 2,572
Registered: ‎03-13-2010

Jackie - I am still suffering with the orchestra inside my lungs, mainly the wind instruments - you crack me up, lol!!!  Thanks for the laugh I needed it.  And my head must weigh about 100 lbs.  I did find an inhaler I had been given last time I got something like this and am using it.  Also found some Mucinex stuff that is working well.  I have no energy, none.  Am laying low, but so sick of being sick or trying to heal something. Took my oldest son to the airport on Thurs - he's going to Sweden for vacation, lucky duck.  Earlier in the year he went to Costa Rica, wish I could do a little traveling!  New York and Washington would be on my itinerary!

Goldie - how are you doing this summer so far?  I think about you everytimne I watch the weather!  We had a nast storm/tornado last week here. 

I am following something my Mom told me to do - if you can't say something nice, don't say anything at all, right now on this board.  Thanks for keeping an eye out.......

 

LL

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Valued Contributor
Posts: 585
Registered: ‎03-09-2010

Re: Cancer survivors

[ Edited ]

@BelleFemme wrote:
Bo,

Glad to hear you are healing well! Have the doctors suggested any other follow up testing aside from physical exams and mammograms?

Belle

 

Thanks so much, Belle!  Yes, I do have other appointments.

My next appts. will be in Sept. to have a PET Scan and Chest X-Ray....then two days later I have my usual blood tests and then meet with my Medical Oncologist to go over everything.  My Medical Oncologist told me that I will see him every 3 months and my Radiation Oncologist said that I will see him every 6 months. My Medical Oncologist does give me a once over but not as thorough as my Radiation Oncologist.  My Radiation Oncologist will still be in charge of Mammograms and Breast MRIs. 

I also will still regularly (not sure exactly how often) see my surgeon.  My next appointment with him is this coming Monday and I don't know right now how many more visits I will have with him before September.

 

 

How are you doing, Belle???  When is your next chemo???  



Valued Contributor
Posts: 585
Registered: ‎03-09-2010

Re: Cancer survivors

[ Edited ]

Jackie and Lannie:  I am doing great!  I see my surgeon this Monday afternoon so I'll see what he has to say too.  I normally go for a walk on a beautiful wooded park trail, but because of trying not to overdo, I've been just walking out my front door around 6:30 in the morning for a 20 min. walk around the neighborhood.  I've enjoyed doing that as it is a bit of a change.  I'm out that early with sunblock on because the sun is so bright I don't want to get too much.  I don't mind getting a bit for Vit. D benefit and  all but don't want to overdo.  If I walk later on, I have to wait till around 8 p.m. because of heat and sun and then I have to watch for the bugs biting me.  I often go out at that time with a neighbor for a stroll with her dog...so instead of sunblock, I'm bugblockin' skin with an all natural bug spray.....   Smiley Tongue ...  Smiley LOL

 

Wow, Lannie...so sorry about all the sinus ****** stuff going on.  That is so miserable...feeling like you can't breathe, etc.  and when you cough I imagine it hurts your incision which I hope is continuing to heal.  Hoping for you that come Monday, you will feel lots better.  Lucky duck that son of yours....Sweden no less....and 2 trips in one year already...  Smiley Very Happy

 

Wishing all a good weekend!

Thinking about each of you....Heart

 

Oh, GCR....how are you making out???   Hope you are getting thru this chemo even better than last one.  Was thinking about tomorrow being Sunday and that's your day to get thru, isn't it?  

 

 

ETA:   Look at those stars up there....and I didn't even cuss.....I called the sinus stuff sinus g*o*o*k stuff .......Smiley Frustrated 

Respected Contributor
Posts: 2,364
Registered: ‎09-23-2011

Lannie, you are postponing the inevitable. How do I know?? because we've been down this road about 3 times already.  Off to the Dr for you on Monday. You can't cure this on your own if it's in your chest. When the orchestra starts it's time for antibiotics.  

Valued Contributor
Posts: 845
Registered: ‎07-02-2014

I do agree Lannie please don't wait. Go to the doctors tomorrow. Remember at the end of March I wound up in the hospital on oxygen for a week. My oxygen intake was down to 86 and had a fever of almost 104 for 7days plus many more horrible symptoms. Took me 5 weeks to recover. So don't let this get a good grip on you start fighting it tomorrow with your doctor's help.  Em

Valued Contributor
Posts: 585
Registered: ‎03-09-2010

Re: Cancer survivors

[ Edited ]

Em...that must have been awful!  What did you have that got you in that state?  

During this last surgery, I remember in Recovery all I said over and over to anyone who would listen to me was "I can't get a deep breath"...."there's something heavy on my chest" (where my surgery was).  I remember just wanting that deep breath and everyone assured me I was fine....oxygen in my nose and all.  When I was put in my regular room I told those nurses the same thing....I simply wouldn't shut up....and then after about 20 mins. in my regular room, I got that wonderful deep breath.  I'm thinking that it was anxiety related, but not to be able to feel like I could get the  one deep breath is still with me.

Yes, Lannie....get to the doctor or wherever you need to go to be checked out and all.  

Valued Contributor
Posts: 585
Registered: ‎03-09-2010

A Special Retreat for Men & Women Living With Lymphedema

May 15-17, 2015

Join us for three days devoted to men and women living with lymphedema. This retreat, offered at no cost to participants through the generosity of our Retreat Sponsors and Harmony Hill Retreat Center, is designed to educate, recharge and inspire those who are dealing with lymphedema and send them home with self-care skills allowing them to live well with lymphedema.

The 2014 Lymphedema Retreat, sponsored by the Northwest Lymphedema Center, in partnership with Harmony Hill Retreat Center, was very successful and has now become an annual event – to include a blend of lymphedema education, self-care tips and healing in a supportive environment.

The Northwest Lymphedema Center believes that those living with a diagnosis of lymphedema need access to all the tools available for their successful journey from diagnosis through treatment and beyond.

When you attend, plan to:

• Discover the role your education plays in the prevention and management of lymphedema

• Focus on your individual needs

• Learn stress-reduction skills and practice guided imagery

• Experience Manual Lymphatic Drainage therapy

• Attend support group sessions to share and learn with others

• Review compression garments and why they are needed

• Create an advocacy network

• Craft a self-care journal

• And much more!

Held in Union, Washington, the campus at Harmony Hill Retreat Center overlooks Hood Canal with a panoramic view of the snow-capped Olympic Mountains. Past retreat participants say: “a kind of magical energy envelops you while spending time at this amazing haven”. You will enjoy comfortable rooms, delicious healthy meals, and the opportunity to get peace from the natural setting, gardens and trails.

 

 

 

 

 

 

 

 

 

 

Hey, Pam....are you familiar with this?  Is it anywhere near you....not asking you to be too specific....realize this is public board and all.  Just wondering if you've heard it talked about.  

Respected Contributor
Posts: 2,572
Registered: ‎03-13-2010

ok, ok, Jackie, bow, em you have me outnumbered, but I will bet money that I get there and my lungs are silent.  They won't say a peep until I come home and cough until I can't catch my breath and sound like I'm drowning, not breathing.  I have only a slight temp and the stuff from nose/throat is pretty clear.   It does bother me that my lungs are sounding so ridiculous.  My Urgent Care is open 9-5 tomorrow so I should be able to get there.