Arm paranoia

To all the wonderful women that have answered my post and continued this post going - thank you.

I have made an appointment with a physio that specialises in the lymph nodes. I'm sure she has a title, but as long as she helps me I will call her whatever she wants me to. 

I was never told about keeping your skin moist, however my mother had a lymph node out earlier this year and her phsio told her, so I have been moisturising daily. I spoke to my gp about a compression bandage and she said the physio may have one made up for me. In the mean time I've got it on my chemist shopping list. 

My goal is to be strong enough to join a dragon boat team like you Sarah. Oh and loose the 10kg I've put on. Everyone thinks because you are having chemo you are going to loose weight - I wish... I would like to think it's the steriods, but I know it's the comfort eating and lack of exercise. I use go to the gym 3-4 times a week and had a PT session once a week. Now the only exercise I get is trying to find my car in the car park (which of course I put down to chemo brain).

I'm going to bring up another topice and that is BRAS. I had a partial mastectomy and my surgeon did a fantastic job of massaging my fat around, so my left brest (under a bra and clothes) looks the same as the right. Or mayb no one is game enough to tell me I look lopsided. I have not been able to find a comfortable bra and although never being told by any professional, I have stopped wearing underwire bras. The range of non underwire bras is very limited. I went to buy a new one last weeked and it just ended up in tear. My darling husband (who we fondly call Danos) went on line and bought me a Genie bra (but waite there is more - you get 3 for the price of 1). What a waist of money. I have some "never been worn" size "L" Genie bras if anyone wants them. I feel like I have a rubber band around my chest (under the brests) I've included an expander on my bras but that doesn't help either. Buying a larger size has not been an option as I'm on the border and have to go up a cup size if I want a larger size.  The  flabby "blob" I have been left with after surgery doesn't help either. If anyone has any tips it would be appreciated. I think I wil try my old faithful underwire bras.

Without trying to take advantage of all of us. I think there is money to be made is designing a comfortable bra.

Final round of chemo tomorrow - Yeepee

Take care everyone

xxx Julie

 yes, thankfully people do get onto massage early, and learning how to drain lymph, plus moisturizing does help to keep skin supple, protected and lymph moving. i had a " bad " experience. something i have to live with.  i think was in denial and  not coping with everything, plus did not know where to turn for help. my GP did not know a lot and the physio i had was not so helpful. i also did not know how to ask for help perhaps?

i too am in a good place, having met some great people where i volunteer; also a new male friend after 10 years single. i too want to travel. i have done a few trips the last couple of years. also this site has some amazing people.

 i do have discomfort at times... but i am careful now.. and do my own massage and have had laser. i understand the anatomy and physiology of the lymph better, so i can work with my body and not against it. there is ageing coming into it too...

one day at a time.. all the best.. love kathy. OOXX

Thanks for your update Sarah.  I too "religiously" moisturise my upper body on a daily basis.  The information session that I attended, not long after my first surgery back in 2006, really stressed this point.  It keeps our skin from drying out and getting "sores" and it also works the lymp system.  Thanks for reminding and educating others who may not know this.  (It becomes second nature and is an automatic task).  Dragonboating is so much fun - but unfortuntely I am out until I see what the Orthopedic surgeon asseses on my right shoulder (opposite to bc side).XLeonie

Hi

I started this blog it seems a long time ago and thought I should update on what's happened since. My arm is great and very strong now have joined a Dragon Boat Team and this has helped with movement and strength plus a whole new social group so much fun. I also have a monthly lymphatic drainage I went initially for the slight swelling under my arm which has now completely gone and my scar which was very tight is now flat and smooth. I still go because I like it and she also does a mean foot massage. Have been on holiday to Thailand I wore my compression sleeve as directed and had no problems the flight was 8 hours, want to travel to Europe next year so  we will have a stop on the way and on the way back so can allow my arm to recover. I still moisturise my arm and chest everyday and feel lucky that i have recovered so well.

Good luck to you all

Sarah x

Back in 2003 when I had a lumpectomy,full node clearance and radiation it took  a long time for my arm to recover.(years?)Even so I would still get a discomfort or a heaviness on and off.Last year I had a recurrence in the same breast so had to have a mastectomy and some chemo(only 1 round)and am now on Tamoxifen.My chest area feels like I have duck tape across it and I feel like I'm carrying a football under my arm sometimes and yet both areas are quite numb to touch.My arm isn't too bad now,just aches if I overdo it like move furniture.I accept it will never be the same.I have a very "gnarled"chest scar which prevents me from wearing any slightly lower neckline tops.I've sewed fake camis under my existing favourites.I also have a dodgy ankle which I broke very badly 4 years ago and had 3 operations on.So I can't wear heels or stand on it for too many hours.I'm a walking disaster!My husband calls me his little broken doll.So I know just how you feel Julie- it can be so frustrating.Sometimes the treatments/drugs that we have end up making us feel worse.But I tell myself that there are many who are worse off than me and that I must accept my limitations.I've just read an inspiring autobiography about a young man born with no arms or legs-"A life without limits"-amazing and sure stopped me moaning for awhile!

Have you thought of wearing a compression arm sleeve?I used to firmly bandage my arm overnight when it was painful.These days I try to do a lymphatic massage each evening.I also did special water aerobics in a hydro pool at the San hospital which helped get arm range back(2003). The other exercise I was given was to lie on the floor ,arms up holding a broom and with your"good"arm slowly push the broom back ,dragging your "bad"arm with it -  strain don't pain.Good luck little broken angel.

                                       Tonya xx

Back in 2003 when I had a lumpectomy,full node clearance and radiation it took  a long time for my arm to recover.(years?)Even so I would still get a discomfort or a heaviness on and off.Last year I had a recurrence in the same breast so had to have a mastectomy and some chemo(only 1 round)and am now on Tamoxifen.My chest area feels like I have duck tape across it and I feel like I'm carrying a football under my arm sometimes and yet both areas are quite numb to touch.My arm isn't too bad now,just aches if I overdo it like move furniture.I accept it will never be the same.I have a very "gnarled"chest scar which prevents me from wearing any slightly lower neckline tops.I've sewed fake camis under my existing favourites.I also have a dodgy ankle which I broke very badly 4 years ago and had 3 operations on.So I can't wear heels or stand on it for too many hours.I'm a walking disaster!My husband calls me his little broken doll.So I know just how you feel Julie- it can be so frustrating.Sometimes the treatments/drugs that we have end up making us feel worse.But I tell myself that there are many who are worse off than me and that I must accept my limitations.I've just read an inspiring autobiography about a young man born with no arms or legs-"A life without limits"-amazing and sure stopped me moaning for awhile!

Have you thought of wearing a compression arm sleeve?I used to firmly bandage my arm overnight when it was painful.These days I try to do a lymphatic massage each evening.I also did special water aerobics in a hydro pool at the San hospital which helped get arm range back(2003). The other exercise I was given was to lie on the floor ,arms up holding a broom and with your"good"arm slowly push the broom back ,dragging your "bad"arm with it -  strain don't pain.Good luck little broken angel.

                                       Tonya xx

Hi Leonie,

Thanks for sharing your story, although not one that sounds all that positive. However, as you said you have your life and I have mine, so all the other "stuff" means we know how to "suck it up". Everything you have described I have, but I'm going to try and keep positive, as it's still only early days for me, so I'm hoping it will get better over time. 

Like you, what was known as my "good" arm is not so good anymore. My veins are damaged because of what the chemo has done and due to the scare tissue caused by the DVTs. Using this arm is very limited. I've just finished doing the dishes and my fingers are now swollen and my arm has a dull throbbing pain. My poor arm is trying it's hardest to pump blood. I've been told that the chemo vein damage should get better over time, but the damaged caused by the DVTs will remain. On a vanity note I also have this very ugly patch of broken capillaries at the top of this arm where the DVTs were. So I try and find tops that cover that area, which is next to impossible.

I call my arms my broken wings and keep reminding myself how lucky I am. Not only am I alive and I know I will beat this, and I have a cleaner who does all the 'big'  cleaning jobs around the house. How lucky is that...

Good luck with the orthopedic surgeon Leonie.

Julie

Hi Julie,  After my first surgery and radiation back in 2006/2007 I was unlucky to have exactly what you describe.  I was always looking in the mirror comparing my arms and also bothering my husband to check them.  I religiously have my lymphatic drainage massages and still the pain.  After a couple of years of still having the pain (others I knew did not have this pain) my surgeon said "Well it looks like after such a long time you are stuck with it"  So I have "learnt" to live with it.  There is no rhymn or reason for the pain - if I do too much I get it.  If I don't use the arm enough I get it.  Then with this new diagnosis last December and subsequent surgery, radiation and chemo I am now in agony - and of course the Arimidex just adds to it.  I am taking so many vitamins (can't take strong pain relief) having all the natural therapies and there is no let up.  I have also found out that my other arm has a tendon tear in the shoulder!!!! (off to see the Orthopedic surgeon in mid November) I am so tired all the time due to not being able to get a good night's sleep - too uncomfortable with pain.   Yes I do know what you are going through - apparently it is the "dead" nerve endings.  People say how good I look (and that's terrific) but the pain is unbearable at times.  My suggestion to you - keep looking for answers and enjoy the times that your arm is "not too bad".  I actually said the other day that I would love to have a day with no pain - can't remember what that is like.  But the good thing is I AM STILL ALIVE to tell the story!!!!!  XLeonie