Guestbook Number 1

Numbers 1 - 25

January 17 - April 6, 2000

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Carol send me this poem. I got her permission to put it in the guestbook.
She has written other poems on cancer, so if anyone wants them or her factsheets just let her know.

25. Carol Habrovitsky carol@habrovitsky.freeserve.co.uk
Glasgow , Scotland
April 6, 2000 at 13:23

My arm, my arm what is it like
Oh, the shape, the size
Is this the result of my Cancer?
Lymphoedema ,my life
What is this new condition
Can I beat it or who wins
The saga of Cancer continues
So to another fight
There is so little information, help or relief
I will find the necessary help
The Internet will be my search.
Ugly arms and legs we do not want.
Yes, we will beat this thing
It will not disfigure us
Let a concerted effort be made against it
For in the future we all will be perfect.

24. glenn warner glennwarner@hotmail.com
daytona beach florida , america
April 5, 2000 at 18:18

I am a recent diagnosis of lymphedema. It has affected my legs and my left arm and hand. So far I have seen my knees get to be the size of cantalopes, my left hand becomes useless with swelling. I am in a constant state of arthritic pain like symptoms. Basically I am miserable. Can anyone advise me, give support, or help me in anyway? How do we work in these conditions? Thank you

glenn

glennwarner@hotmail.com

23. Beth H. gaeagg@ix.netcom.com
St. Louis , USA
April 4, 2000 at 21:37

I have lymphedema in both my legs and in my lower abdomen from removal of many abdominal and groin lymph nodes and lymphatic channels from surgery for lymphatic metastasis from cervical cancer. I also had radiation to my abdomen. I had a lot of swelling in my lower abdomen immediately after surgery and as I spent more and more time sitting and standing, I had progressively more pain in the upper inside of my legs. My surgeon was no help (and, in fact, denied I had lymphedema even after I learned about it and asked him about it) and eventually the pain decreased but my legs started to swell. Finally, I got a referral to a lymphedema nurse and underwent manual lymph drainage (MLD) as well as continual bandaging for three weeks (in mid-summer--I was hot a lot!) She taught me how to do the massage and bandaging and after treatment I "graduated" to compression hose during the day, bandaging in the evening and daily MLD, and a glorious period of no compression at night when I sleep (I prop the foot of my bed up a few inches to help my legs stay drained). My biggest problem is finding hose to fit properly--I cut the waistband because it is too binding and the hose digs into the backs of my knees and at the groin when I sit (ouch!). I need my hose to have "grip" so they will stay up and I need a snug panty to keep my abdominal swelling down and it seems that if one brand is good in one area, it's not good in another area. Joe, I'd really like to hear more about your 50-60 comression hose. Right now I wear 40-50 but it doesn't keep the swelling down completely (Juzo and Medi). I also have Jobst (30-40) that are quite comfortable behind the knees but I have to wrap in addition if I'm at work all day (just one layer--my own invention but it gets rid of the pain). And, Joe, the National Lymphedema Network (it has a good site on the internet) has a tape that explains manual lymph drainage, although it's best to get the full therapy from a trained nurse first.

I just want to say to all of you who feel down and discouraged--it IS tough (and many doctors DON'T take it seriously enough, i.e., they think compared to cancer it's nothing) But please don't give up on your treatment or therapy. Compression and mild exercise (ALWAYS wear compression when exercising), as well as drinking lots of water and avoiding hydrogenated fats (such as margarine and most baked goods) can really help. And, really, sleeves or compression hose don't look that bad. Wearing them can help so much and keep you from further pain, disability and damage to your arm or leg. To those young ones who have posted--you have a long life ahead of you. It's important to keep up your therapy so your lymphedema doesn't progress. It's helped me to listen to my body and watch for pain--and try to relieve it (without pain meds). I feel that my body is the best signal for if I'm doing something right or wrong.

Yvonne, thanks for setting up this board. I certainly will check back often! Best wishes to you all.

Beth

22. Joe Angelicchio jangelicchio@yahoo.com
Lisle, Ontario , Canada
March 27, 2000 at 01:17

Hi I'm Joe, Had Lymphedema since the early 80's in my lower left leg. I'm 38 now and I've been controlling the swelling with 50-60 strength Sig. stockings. Like to find out about this manual drainage massage and the reid sleeve. I'll be back with more info sometime.

21. Carol Habrovitsky carol@habrovitsky.freeserve.co.uk
Glasgow , Scotland
March 26, 2000 at 15:45

Hi I am Carol with Lymphoedema.

I have had Lymphoedema for 5years with every treatment available. the best is "Paroven" a grape seed extract obtainable on the NHS in Britain. Other drugs such as "EnHope to hear from someonedotelon" obtainable in France,. I produced a Lymphoedema Newssheet for a year & have copies about all my research if anyone is interested. I would love to hear from fellow Lymphoedema sufferer's.

20. ursula lee ursula
haywards heath , uk
March 23, 2000 at 16:57

Hi from England - I had a radical vaginal trachelectomy to treat me for cervical cancer. This involved removal of the cervix and lymph nodes in the groin area. I had never even heard of lymphoedema until I kept complaining to my consultant of pain in my right groin. I am lucky in that I have found a wonderful nurse who specializes in lymphoedema - but it it still doesn't stop me getting fed up with the pain and frustration at my inability to be active as I was prior to surgery.Just found this site today - it is great to share experiences with other sufferers!!! Keep exercising - Pilates is great - the slow movements combined with breathing really seems to help me.

bye for now

ursula

19. Crystal Lexie_Q@webtv.net
Salem, Ohio , USA
March 23, 2000 at 14:22

To Elizabeth: I don't really know about le in your arms, but I do know about le in general. What I do know is that the cases vary from person to person and some people will have good days and bad days and some people will only have bad days. I guess for those people who have good and bad days (like myself) can consider the good days remission. You are lucky to have a treatment plan. Because I am still in school, I cannot receive the proper treatment for my le. I would have to miss at least three hours of school a day for at least six months in order to get the treatment the doctors wanted for me.

To Everyone: Email me if you wish b/c I feel really alone on this issue and would love to have good friends who understand the severity of le.

18. elizabeth jansze ashby de.ashby@sympatico.ca
peterborough ontario , canada
March 18, 2000 at 21:56

It's just two days since I learnt of my condition and the thing that bothers me most is that it looks like I am going to be stuck with it for the rest of my life. Like most of you I have cancer (breast). I had two surgeries, the first was for the removal of the tumour and two months later for the removal of lymph nodes, which ironically the results showed that the cancer hadn't spread. I went through five weeks of radiation in January/February '99 and thought that was it except for taking tamoxiafen for five years. And, of course, keeping my fingers crossed!! I was told of the possibility of problems vis-a-vis the second surgery and the need to be careful with my right arm but there was never any mention that radiation could exacerbate this condition. More so, fifteen months after my therapy. The treatment I have been given is the wearing of a sleeve and being hooked up to an extremity pump three times a day. I am expected to wear a Comprilan bandage at all other times. This therapy has been designed for three months; however, I see the specialist in two and then I shall learn what else is in store for me. Can anyone tell me if this condition is ever in remission or does one have to come to terms with having to wear a support sleeve for the rest of my life?

17. frances Skinner frances_skinner@hotmail.com
London , England
March 16, 2000 at 12:44

Greetings from England.15th March 2000 Thanks for a really useful site. I got my Lymphoedema last year 2 years after radiotherapy. I am very angry about it. I share your problem of ill fitting sleeves. I found SIGVARIS great for hand and lower arm, but fell off above elbow. I also hava a Medi sleeve, horrible colour, fits better but it is too loose at the wrist. I have solved this problem by using a couple of layers of crepe bandage, it fills out the wrist, stopped the pain and now I can even see the veins in the wrist. Have the inside elbow problem too so I wear an inside liner of white cotton. It is TUBI something, I get it from the drug store. Mine has a green band and I cut off a good length and wear it under the stocking. It helps BUT does not cure the problem. I also use DIPROBASE cream on the arm BEFORE I put on the stocking. Hope this helps. Frances_skinner@hotmail.com

16. Crystal Lexie_Q@webtv.net
Salem, Ohio , USA
March 15, 2000 at 14:36

I am a 17 yr. old high school senior diagnosed with primary lymphedema in my left leg. I noticed swelling the end of my sophomore year and was concerned because of hereditary blood flow problems. After several doctor visits I was told that it was not clotting, but LE. This was told to me early in my junior year. At first I had a doctor who did not tell ME anything about lymphedema- but rather would tell my mother who would come into the office with me. I honestly hated that man for not telling ME what was going on. One day after school I came home and my leg was terribly swollen. A doctor's appointment was made for the next day. After I was a horrible patient for him, he refered me to the LE Center in Akron, Ohio, which isn't too far from where I live, thank God. I have only been there once b/c of a billing problem and my mother refuses to make another appointment until it is straightened out. That was over a year ago. It wasn't until I went to the LE center that I started to understand what I had. Severely depressing, as you all know. I still don't understand everything, though I visit every LE site I come across. I am thoroughly upset by all sites, too. It's so hard to cope with. I try not to advertise the fact that I have primary LE. I take mild pain killers (except today seems to be really bad b/c I didn't take them) to quiet my leg. I wear compression hose under my pants some days. I don't wear dresses or skirts and I hardly wear shorts. My swelling comes in "flare ups." Meaning, my leg does what it wants when it wants, and to whatever severity it wants. Today is excrutiating. I very seldom wear my bandages. I hate them and it hurts my pride. This LE has forced me to question faith (I'm an atheist by choice). If there is a God, I would like to ask him this: "Why me? Why lymphedema? It just had to be primary, too, didn't it? That way I don't know what caused it."

I feel very alone with this b/c no one around has it. My family doesn't even get what I'm going through, though they try to sympathize. My friends at school tell me they are sorry when I'm in pain. I don't want sympathy, I want help. Sympathy won't cure this. Please please please anyone keep in contact with me. I'm dying for a friend like me who understands!!!!!

15. Juanita jdlowe@arkmola.net USA
February 18, 2000 at 21:15

Hi Yvonne, I also have lymphedema in my arm. I had surgery around nine years ago. I was told I might have cancer but, I ended up not haveing it. They removed all my lymphnodes under my right arm. And I was never told that I could end up with this condition. I was never told anything. I wondered why my arm was swelling. It first started in my hand. Usually when I was walking and all the fluid would pool up in my hand. I had no idea what was going on. I had no idea about the different stages. And I did not know that I should stop doing a lot of things that I normaly did because it would make it worse. I did see a MLD therapest last year. She was more concerend about the fibrosis that had set in my arm than the lymphedema it's self. I have not been able to get treatment as my insurance will not cover it. They will cover my compresson sleeve and bandages but, I have to see the therapist before I can get one. So as you can see I have had nothing done about it for nine years. I get very down alot. As I am sure most of us do that live with this condition. Just knowing that I will have it till the day I die. And I still go through this denial. I tell myself that I don't have a problem with my arm I just ignore my arm as if it were not even there. My husband and my family tell me you can't do that. You know I guess I will have to do it until I can find a way to deal with it.Some days I think ,ok I am going to get this treatment and put on those compression sleeves and not care what people think or what I will think of myself with them on. You know I just want to be normal again. And I know that I will never be and that is so hard to deal with.I have three small children and how can I just stop doing things that have to be done. I have no one else to do them so I have to. Whether my arm likes it or not. I am sorry if I am sounding so down. I think this must be one of those days that I am haveing a hard time with my lymphedema. I hope to hear from you and I hope everything works out well for you on getting the right sleeve for your arm.

14. GEETA BISSOON
February 18, 2000 at 01:22

Good work and I am looking forward to hear from you.

13. SREBRENKA SERAVIC folklor@matis.hr
ZAGREB , CROATIA
February 17, 2000 at 14:55

Please, send me more information about Lymphoedema, about therapy. My aunt (born 1929) is seriously ill: she has diagnosed lymphoedema in both legs. Two months ago lymphoedem started to spread to the body and torax, enabling the normal function of patient. She can hardly breath. The lymphoscintigraphy shows an existance of a blocade of the swelling on the level of the pelvic lympahtic tangle. Doctors cannot find out the reason of ilness, no cancer was found. Diuretics did not help her, the same was with manual lymph drenage.

Srebrenka Servic Zagreb Croatia

12. Eloise Frey Racine HartFrey@aol.com
Wisconsin
February 11, 2000 at 10:18

Delivered-To: yvonne@catv8134.extern.kun.nl
Return-Path: HartFrey@aol.com
From: HartFrey@aol.com
Date: Thu, 10 Feb 2000 08:55:48 EST
Subject: MLD Therapist To: yvonne@catv8134.extern.kun.nl

I would like to be listed as a Vodder certified MLD therapist.
I am listed on the NLN.
What info do you need?
Eloise Frey Racine, Wisconsin.
I enjoyed your web site!
Thanks

10. Yvonne KlassyKeys@yahoo.com
Harper Woods , usa
February 7, 2000 at 23:02

Would like to be able to ask others with affected limbs question.

9. Yvonne
February 7, 2000 at 18:28

Dear patients,
I found a good lymphedema support group.
When I found out I subscribed immediately. I already received heaps of e-mail.
Patients and their family and therapists write, give advice and ask questions. It is called the ACOR Lymphedema Support Group. This link is on the links page under English links. You can subscribe immediately. Or go to the Lymphatic Research Foundation, also under English links. Click here on 'Of Particular Interest to Patients'. To join the online support group click ACOR.
Good luck,
Yvon.

8. Candi cives@pgst.nsn.us
Kingston , USA
February 7, 2000 at 17:05

I had a modified radical mastectomy last November 1999. I am angry at my doctor because he did not forwarn me about lymphedema and now the more I learn the more I resent being kept in the dark. If my doctor would have given me more information it may have influenced my decision to have a lumpectomy instead. Alls he told me was he did not want to influence my decision so he told me I had two choices. A lumpectomy with radiation or a mastectomy with no radiation. Of course the one withoug radiation seemed like the logical way to go. Now I am left with a "dogs ear" flat of skin behind my arm that interferes with wearing a bra and interefers with lymph drainage, my arm swells, hurts, and is unbearable in the evenings. I am still going to a therapist twice weekly to get the strenth back in my arm, but what a long painful process. I am finally able to do the simple tasks like picking up a coffee pot without dropping it or curling my own hair, things that I never gave a second thought to before now is a challenge. My theorapist suggested I ask my doctor for a prescription for an arm sleeve to prevent my arm from swelling when I over use it, but my doctor denied me without any reason. I called his office to ask if he removed all my lymphnodes or just a few of them, the nurse couldn't read the charts to give me an answer and the doctor never did even return my call. How many other wownen are in the same situation as me? After all my conplaints, do you think I should seek another doctor or should I confront the one I have for answers.

7. christine budnack cbudnack@yahoo.com
newfane , usa
February 2, 2000 at 17:20

hi yvonne! it's good to hear from you!
i knew your site was a new one as i periodically check out the resources for lymphedema. i'm glad you wrote!
no, the medications didn't help. i do take ibuprofen 800 3 times a day everyday to combat pain. the water pills and stuff didn't do much except make me dehydrated all over except in the leg! i tried alot of steroids too.
the doctors didn't know what do really and i did finally go to a clinic in West Seneca, NY and consulted with a specialist but it was too much to ever go there for treatment. it was a 2 and 1/2 hour drive each way and on the way my leg would kill me! the lady said i'd have to come for approximately 6-8 weeks every day and go through decompression, pumps, massage, and keep it wrapped the whole time and i'd be there about 3-4 hours of the day. the cost was only 80% insurance covered and amounted to me paying several thousand myself which isn't an option nor was missing work! i'd probably be fired if i took that time off! although i work in a school i don't get vacations unless it's unpaid in the summer and it's not possible with the cost!

my leg varies. it pools the most in the ankle and knee but the entire leg is always somewhat swollen. it's a good 2-3 inches bigger alot of the time but on good days only about 1 inch.
the venogram is a horrible, awful test you never want! you are injected with some kind of iodine like stuff in the feet and the needles stay in you taped to the tops of your feet and you are hooked up to a monitor. your legs are taped pointed like a ballerina's outward to the table and your arms are taped above your head. this stuff goes through your body slowly in all the veins and it takes 3 hours. you lay there in AGONY! you aren't to move and you hurt awful afterwards! i had the most awful bruises you ever saw on my feet where vessels had broken and the needles went. i could not wear shoes for days as it hurt and my leg puffed up so bad! i said never again. they did it to rule out any vein problems and clots. it was one of the first tests i had before I was diagnosed. they did abdominal sonograms, complete body exrays, cat scans, mri's the works. it was pure torture and i missed alot of work.
yes, my life sort of stinks now.

the lymphedema has really changed me. i get down in the dumps quite a bit. i'm financially strapped from all the stuff not totally covered and the fact i went for various expensive non-covered treatments.
I was going to a therapeutic massage therapist in lockport 2-3 times a week. she and i got to be friends and she gave me a break of only 37.50 for an hour rather than the 60.00 or more others charge. she was knowledgeable in lymphatic massage too but had not finished the training as she could not afford to take off work to do. she was pregnant. she is on maternity now and may not go back to massage!!! help! she may marry and leave the area.
i have another person who charges me 45.00 a shot but you know it's not covered and it's so hard.
also i get terribly afraid. i've gotton scratches and bruises on my leg at work from kids bumping me and i won't walk in the halls at the same time they do. this gets me into trouble as i wind up late to things.
work people are not understanding. people don't know what it's like unless they experience it.
i do not ever wear shoes other than sneakers now as i've fallen a few times. my leg is numb at times and it's so easy to fall.
i get criticized for the sneakers too.
i cannot be active as i was and i've gained weight which is terribly hard to lose. i feel bloated you know? it makes me so angry sometimes. i do not wear skirts, shorts, or dresses.
i cannot kneel anymore as my knee is swollen and i've been told not to as i could rupture the kneecap.
i cannot sit in long meetings (but they don't care and i'm expected to unless i call in sick) or stand for a long time.
i had to fight not to be forced to attend a work related walking tour of all our districts schools! it's hard.
family doesn't understand either. i take care of my elderly parents and they are demanding.
since my 1996 accident i get migaines too. i had a bad neck and back injury. never had those before. i miss work now for the headaches too!
the worst part is waiting. my lawsuit was scheduled last august for court. we went and were supposed to be set up in october for a settlement hearing. the othe insurance company dragged up a paper i signed that they said was for 2 days sick pay that they have a tiny clause in saying i won't sue. my lawyer says it won't hold up but there is that worry that it could! also, in october for the settlement hearing, the judge never showed up! it was put off until jan 10 this year. guess what? the judge never showed up! now we are playing the waiting game again. it's so aggravating.
i don't mean to gripe! sorry! that all just vented out! usually i'm a positive person but sometimes i guess i get depressed about things. usually i go off by myself and wait until it passes.
i hope you will write back!
take care!
christine

6. Yvonne Janssen yvonne@weezenhof.nl.eu.org
Nijmegen , The Netherlands
February 1, 2000 at 22:00

So now I'm stuck with a stocking I have to wear each day for the rest of my life. The stocking is stiff, doesn't comply and has a disgusting color. It would be nice, if this stocking would fit and would not hurt. I wear a stocking each day since the spring of 1996. First of all the stocking seldom fits and secondly it hurts all the time. It hurts not only at the wrist, but on the inside of the elbow too. The skin there is red and aches. And this will go on and on and on and only will get worse. When will the skin get a chance to recover when I have to wear the stocking each day and only at night the skin gets the chance to recover? I was told nothing can be done about this elbow thing. Every stocking has this. But on the other hand: you have to be careful with your skin when you have edema. How? I wonder.

5. Jeanine Wenzel jwenzel@icoe.k12.ca.us
Brawley , U.S.A.
February 1, 2000 at 01:54

I had surgery in May of 1993 for breast cancer. Some lymph nodes were removed from under my left arm. I have been noticing increasing pain in my left arm for the past few monthes, not realizing what was happening in my arm. I did compare the sizes of my two arms but didn't notice any difference until recently. The pain in my left shoulder and arm has been unbearable. I have been keeping my arm elevated as much as possible (not that easy), and I have used ace bandages to wrap my arm. The bandages seem to be keeping the swelling down. I have yet to contact my doctor and I hope he knows what to do. It is nice to know that there are people out there I can talk to.

4. christine budnack cbudnack@yahoo.com
newfane , usa
January 31, 2000 at 19:36

I'd like to say hi to everyone who visits this page first of all. I developed this condition after a 1996 car accident in which I injured my left leg. It was very puzzling and all the tests I went through were terribly painful. No one knew what was wrong until I met up with a surgeon in Lockport, NY. He diagnosed it right away. I've had EVERYTHING imaginable treatment wise. I had the stockings, elevation, manual lymph drainage, the pneumonic pump, massage, chiropratic adjustments, and different medications. I am in the midst of a lawsuit against the other driver as he rammed my car while I was stopped at a red light! He wasn't hurt and I had nearly $4,000 damage to mine. I saw it coming and braced myself for it with my leg. It's amazing how you can damage things and not know it. My leg was sore for about 8 weeks, aching and puffy looking. I thought I bruised it or sprained muscles. Then my ankle bloated up terribly so the flesh was hang over my sneaker! I got tto the dr who did venograms and more horrible tests. It has been an experience. I don't see much on people who have acquired the lymph condition this was and would love to hear from anyone to share and chat. If anyone has acquired this from an accident I'd like to share with them as well!

3. Yvonne Janssen yvonne@weezenhof.nl.eu.org
Nijmegen , The Netherlands
January 31, 2000 at 13:23

What frustrated me terribly after I had my first operation, was the fact that good treatment of lymphedema wasn't so easy to get as I thought it would be.
I had to find out everything myself. The surgeon didn't recognize I had it.
After finding out I had cancer I wanted to get on with my life and do the things I really care for. I wanted to be taken care of.
It turned out that at the first operation the tumor hadn't been removed completely. In September 1998 I had a second operation in another hospital. This second time my breast was removed completely. I'm awaiting a new operation now: nothing with cancer thank goodness, but with implanting an artificial breast. I'm very anxious about it. I hope everything will turn out fine. If that is so, then after a year I will have another operation on the other breast to make it smaller.
I'm very grateful for the fact that these breast things are being taken so seriously. On the other hand I wonder why the treatment of edema is not taken as serious as well? Surely it cannot be a matter of costs? Or is it? Or am I the only patiënt that is so frustrated about this? Yvon.

2. yvonne
nijmegen , the netherlands
January 26, 2000 at 13:45

One of the most frustrating facts I have to deal with since having lympedema is, that I cannot get a good stocking for my arm nor a good glove for my hand. Since the beginning of 1996, when I discovered that I had oedema, I never had any that fitted right. They were either too tight or too slack. Then there is the problem, that the stocking or glove falls to pieces regularly and has to be sent to the manufacturer to be mended. It takes weeks before I get it back and so I have no stocking or glove at that time, while I should be wearing one continually. The last couple of years the stocking and glove make my wrist ache. They are too tight. It aches during the day, and it aches at night when I am not wearing them. My thumb began to ache too. It was driving me mad. When my glove was once again send away to be mended, my husband suggested I try to wear no glove at all for a while. I've done this now for a month or so. In the daytime my wrist still hurts, because the stocking is too tight, but at night I sometimes don't have any pain. My hand is getting thicker, but what can I do? Recently I ordered a new stocking that I paid for myself. I need two stockings and the insurane only pays one. Each two days the stocking has to be washed. I do this before I go to sleep, but next day the stocking is still wet. So I need a second stocking. Now this second stocking, that should have had the same measures as the first one, is much shorter and at the wrist it's much tighter. The one who measured the stocking holds the manufacturer responsible and the Dutch representative of the manufactures is ill and cannot be reached. Normally you could ask your money back in a situation like this. Could someone give me advize on this?

1. Thom Oostendorp
Nijmegen , the Netherlands
January 17, 2000 at 10:33

My wife has lymphedema, since here lypmh nodes were removed in a breast cancer operation, 5 years ago.

What strikes me is how little attention is paid to lymphedema by surgeons. Their attitude seems to be: "why whine about a little edema, the cancer is much more serious". Of course, cancer is life threatening, but the impact that lymphedema has on ones lifes is also quite large. Moreover, before her operation my wive was quite healthy, and she came out having to deal withe lymphedema the rest of her life, so from her point of view the effect of the edema is quite dramatic.

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