terrified of making my arm worse
terrified of making my arm worse hi this is my first time on this chat line, if someone said i’d be using this i wouldnt have believed them. i was diagnosed with imflamatory breast cancer in oct 04 following 5 fec chemo the tumour stopped responding and then had mastectomy, in order to continue with tx i had oopherectomy and started on arimidex, followed by 20 rad. i had initial swelling of my uper arm and put it down to the surgery. I returned to work in oct '05 on a phased return (healthcare profession) having recently seen my breastcare nurse she has now confirmed lymphoedema. She has also stated that i am putting my arm at risk and this is a great dilema for me as i have to work (and sometimes i want to work but am not sure if i could just pack it all in and give up the struggle) i would love to hear from anybody who could give me advice. This is a great worry to me and i constantly feel down about it. I thought that getting back to work would be all i would need. i have also to have another mastectomy as my surgeon says i am at a high risk of cancer returning, feel i am at a low point and need some cheering up, i have read lots of the postings and there seems to be a great deal of women out there who sound positive. please could i hear from somebody
Hi megan,
I just wanted to write and send you a hug! I have lymphoedema, and, until i got it under control, I felt dreadful. It interferred with all aspects of my life, and made me into a very negative person, even though I had been positive through the treatment. I have been very aggressive with my lymphoedema, it was 18% and is now 7%. I have sleeves and gloves from clinic, and keep going back if they are uncomfortable to get a different one, mld which I had to pay for, bandaging for three weeks. I have tried kinesio tape and I have just bought the reid sleeve from America. The point that I am trying to make, is that there is hope, there are lots of things to try and, hopefully, if you get it under control, you an then lead a normal life. hope this helps,
Love Debbie
lymphoedema Hi Megan,
I think if you are trying to make a huge decision like whether to give up work or not you need to get a lot more information and help. A few things I would suggest are: join the lymphoedema support network for more advice and info, ask to be referred by your GP or surgeon to your local lymphoedema service (if there is one), ask to be referred to your Occupational Health Doctor at work (that is their speciality to take you, your illness and the job into account). I am off work at the moment having intensive treatment for my lymphoedema from the specialist lymphoedema service - I am lucky to have this in Sheffield. I am only off for two weeks to have bandaging and manual lympahtic drainage and then should be back at work with, hopefully, a less swollen arm. My lymphoedema practitioner is very good at helping me to weigh up all the pros and cons of different sorts of treatment and how they will impact on the rest of my life and it sounds like you need this sort of help too. There is another thread on lymphoedema on the ‘living with breast cancer’ forum which you might find useful. I’m finding the lymphoedema very hard to cope with and was in despair last week as it just seemed to be getting worse and worse for no reason. I feel a bit better now I am having quite intensive treatment - and I’m sure I am benefiting from the psychological support of my lymphoedema practitioner. I hope you manage to get some more support on this.
PS if you google ‘lymphoedema support network’ you should get the right website.
Best wishes,
Rowena
Megan I have lymphoedema and know how distressing it is. I have had recurrent cellulitis and when the cellulitis is active I feel really very low and depressed. Unfortunately you are coping with the lymphoedema in addition to your other problems. So you are entitled to feel down and depressed about your situation.
I think the problem is that we feel out of control of the situation, especially when we get lymphodema on top of everything else. Have you thought of going to your Citizens Advice Bureau to ask what benefits you would be entitled to if you had to give up work? Couldn’t your employer offer you a job that you would be able to do? Have you discussed this with your employer?
I get DLA lower rate because of the lymphoedema. Personally I have found once I took charge of my lymphoedema by going to a lymphodema clinic and having regular MLD and getting as much advice on the condition as possible I felt more in control and better in my emotional and physical state. Of course I still feel down at times but I am finding that these periods are becoming less.
Wishing you well.
Joanx
— Hi Megan.
I to have slight lymphodema to lower arm. I wear my sleeve which I find really helps and also do exersises (not as often as I should. As far a work is concerned have you been to see your manager as they may be able to find you something else to do that is not as strenuous on your arm. Also if you need further surgery and you are running out of paid sick leave you are entitled to incapacity benefit. hope this helps.
dealing with lymphodema Hi,i too have lymphodema,its in my hand .i wear a special glove from my breast cancer nurse.iam on incapacit benefit and low rate DLA. I have seen an advisor at the job centre about what choices i have.iam keeping my job open ,but because i work in caring and have to do moving and handling with clients i work with.i have decided to do an iT course while iam off sick.there is help out there.also i have been doing aquarobics once a week.this seems to be helping .Bubble
— Hi Megan,
it’s the pits isn’t it! My lymphoedema is now in my arm and hand after being restricted to my reconstructed boob, trunk and under arm area. I am just coming to terms with the thing…pressure sleeves rolling down, a glove which seems to make it worse, a pressure vest that is really not at all sexy etc etc. It’s all very depressing as we just want to put this all behind us then this hits us…and I , like you, and also going for a second mastectomy (and reconstruction) due to ‘significant risk’ of second primary…as if weve not got enough…! There is a lot we can do however to make it affect our lives as little as possible… to work round it… and to keep it under control, I hope…
I am an occupational therapist and although don’t work with patients any more, am used to helping people whose daily activities are restricted for some reason to find ways to help themselves to carry out the activites they want or need to do. When my hand was swollen I was so restricted as could not make a fist or oppose my thumb to my index finger when my wrist was bent etc… My range of movement at my shoulder was worse due to the swelling and it all gets worse as the day goes on. The pressure garments are even more restrictive. I was also terrified of making it worse and frightened it would just keep getting bigger. I suppose I will get used to how to manage it with the following:
-Simple Lymphatic drainage (taught to me by my lymphoedema nurse)
-Kineseo-taping which helps stop build up under my arm(as above, wich I find VERY helpful but is difficult to remove adn takes a layer of skin which is contraindicated due to risk of infection…I now plaster on the vaseline and leave for 15 minss before slowly rollling it off which seems to help but is VERY messy)
- wearing a pressure vest top which stops build up in the trunk and breast
-short excercises every day and stretching with deep breathing, taught to me at the clinic
-moisturising every day to keep my skin good as a barrier to infection
-I also, carry antiseptic wipes and plasters everywhere I go and a course of antibiotics when I leave home overnight in case I develop cellulitis…an infection under the skin which we are prone to…so can start them straight away
-I also carry the sheet about the treatment of cellulitis as above, from the Lymphoedema Support Network, which tells doctors what to do…and my GP has one.
I am also adapting my work practices eg getting a dictaphone to save so much typing and sitting stil for prolonged periods, getting a phone headset so don’t have to hold phone so long on conference calls or balance on my shoulder, getting a new desk and chair and forearm support, a roller ball mouse so not moving my forearm across the desk, something to access e-mail when out of office so don’t need to carry laptop.
If you have difficutly with practical things in the house such as lifting the kettle, or chopping veg there are masses of wee gadgets to help you and you can make a referral to your local authority social work department Occupational Therapist who is an expert in equipment and adaptations and can advise you.
Please let me know if I can be of any help re your work and thinking about how you can keep on working if that is what you want to do…if you really cannot keep doing what you are doing then they need to think about changing your job to suit you…again, I am happy to be a sounding board if you need… you have a right to work and have changes made to allow you to do this…it is better for you and for the Government if you are employed and employers should support you in this…also cancer comes under the DDA so gives you more push for this if you need it. There were some very good links in another posting re the DDA, Access to Work (where your employer can get grants to buy equipment for you, or other things to support you at work) I have appplied for this.
sorry such a long post…hope it helps…best wishes
Buff
thanks re advice and support oh my god i am totally amazed with the caring response to my plight about my lymphodeama ( although in early stages compared to others) i have just got my internet fixed and found a posting from buff40 which she posted on my birthday (what a present) thanks again re advice and understanding to all who replied and thanks to everyone on this wonderful site it does me good to read the sharing that goes on. I am working full time following a phased return to
work and currently waiting on my mew sleeve which i am dreading because i hear a lot of different veiws about it, but will try it to see if it helps. Regarding my work i am a staff nurse in a busy surgical ward and hav’nt complained about much ,i try to avoid any strain on my left side which is not always possible. If there is anyone out there in the same position re work i’d love to hear from them how they cope !!!
Thanks again hope this all made sense.
for Megan Just wondering how you are Megan, I see you had a 2nd mastectomy in June. I had my second in September with a second reconstruction too. how are you getting on? how is your lymphoedema? i am just going to start MLD with bandaging on Wednesday, paid for provately as no=one round here seems to do it. I am only about 10% bigger in my affected arm but have been unsuccessful in finidng pressure garments to keep it at a decent level. It seems to be slowly getting bigger and my forearm is also getting less soft and pliable so feel I need to do something.
I would love to hear how you are…I am in west central Scotland.
best wishes
Buff