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I had my lymphoedema assessment today - and the lovely nurse I saw confirmed that I do have mild lymphoedema - which I knew anyway so no surprise there.

My arm is actually in a lot better a state than it was a few weeks ago - and I have realised that I actually had phlebitis after the chemo that was likely making everything a whole ton worse. First thing in the morning today I measured for 7%, which is teeny of course, but she said since I clearly have fluid that we will treat it. Especially since I have little kids that need lifting all day (and I am not going to stop doing that!!).

So I got fitted with a sleeve and she gave me a glove just in case wearing the sleeve makes the fluid move into my hand more. She felt it was worth trying to leave my hand free if we could because it will be almost impossible to be hygienic with young kids and a glove etc. Plus I work in healthcare (when I work) so I would have hand hygiene issues etc etc.

I don’t have to wear it all the time yet - on busy days when I have the kids all day on my own and for trips to the playground etc when I know I will be lifting more - and if I am excersising myself as well.

She taught me the excersises and SLD as well, and did a patch test for kinesio tape so that she can teach me that next time. Hopefully to again avoid needing to wear a sleeve too much so I can work and be a Mum ‘properly’.

What do you think?? Does that sound good to you more experienced ladies??

I must say - I felt like a bit of a prat with my very mild swelling - but she was just LOVELY and said I had done the right thing by pushing to get seen early.

Hi Manny

(Unfortunate) welcome to the Lymphoedema Gang, you will see a couple of current threads dealing with the kind of things you describe.

Don’t worry about only having mild LD, I was measured at 4% but it is still a problem for me and I find the support of the others very informative and encouraging.

You automatically qualify for membership so come and sign on!

DaisyGirl xx

Welcome Manny, Yes I measured in below 5% initially and wondered if I was over-reacting and making difficulites for myself; I knew there was fluid there but it always hid when there were doctors around! Like you, I pushed to get seen anyway, and over six months that figure has gone up beyond 8% despite doing everything right, so I am glad I was pro-active because it would have been really annoying to think I could have prevented it but didn’t bother. Lymphoedema will apparently usually progress if not treated, so why wait till it lands you in hospital with serious cellulitis?

I can see that sleeves and small children are going to give you a problem with hygiene :frowning: I have seen vinyl gloves suggested especially for the bathroom, you can get them in B&Q (for use while painting) and a box of 100 costs about £6. If it’s going to be an issue at work you can ask them to modify your job or look at other roles. There are quite a few other healthcare workers here o hte forums, check the Employment Issues area for stuff about Occupational health and maybe get some advice from your union.

Little kids get heavier very fast so giving them a few lessons in safe climbing techniques might be in order.

Thanks ladies. I know this is ‘real’ and I know I am doing the right thing really, and the nurse I saw agreed so that helped.

I wore a tight sleeved top to ‘prove’ the fluid - but she just laughed at me and said she could see it and feel it in the lower arm anyway without it!!

My kids are heavy and that is kind of an issue really. I have a 15 mth old and a 3 year old. Both about 25lb. My eldest has been a real ‘up up up’ kind of kid, but my younger is a real walker and climber. She is almost as good as her brother despite the age gap. I could certainly work on stairs and climbing into the car seat with her though.

Yeah - even the sleeve alone is a nightmare with a poopy nappy.

Work won’t be simple though. I have an occupational health appointment in September - but my whole role and career involves direct patient contact. And therefore hand washing. Sigh.

Now I need to convince my parents this is necessary! They think it is all very silly currently.

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Manny, for issues about direct patient contact, do check out the employment, travel and financial issues zone, there are more than a few healthcare workers over there who have been here before you had the same issues and made a go of it in various ways. But between infection control and manual handling issues, you may find it best to go non-clinical. Need to look after your own body before you can help others and you have two littles to fend for too. Cancer comes under the disabilities act, that means your employer simply has to help you look for a way through. There will be one, and if you can combine children, cancer treatment, work and internet socialising, you already proved you are one hell of a multi-skilled senior time-manager! Also do talk to your union and if you aren’t in one then join! The rep will be able to go with you to meetings to protect yoru rights and get the best deal for you even if you do have to change your role.

LOL - yes - I had my sleeve on today as I went to the farmers market with the 2 kids and the big buggy (my husband was working) - and that resulted in cherry jam all over it courtesy of my daughter. Day 3 and I am already in a mess!!

Hymil - sigh - yes work. I will have a look on that forum, my next Occ health appointment is mid September to see the Consultant rather than the nurse. The nurse I saw last time said I was covered by the disabilities act etc, but it is kind of more complicated than that as I am still in a training grade, but have little to fall back on in terms of non clinical stuff. I know there is always a way with these type of things - but I do fear it may be more complicated than I really want to deal with. Everything you said is very sensible and true - but I am not sure whether I am ready to ‘give it all up’ yet. I am in my Union though.

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Manny, do talk to your union rep; the ones I have met have without exception been super, very supportive and used to dealing with people in distress. You got into the nhs you can get out, and the big advantages of being on a training grade your cv is fresh, your salary not so huge that you are trapped by having to take a drop. (In fact I don’t think you ever reach that point in the nhs do you?)

Maybe give the phone helpline a call here or at macmillan? when you are so used to supporting other people, it can be really hard to get help for yourself, but this is one time you need to. There is life after cancer and I’m told there is life after work too - hoping to live long enough to put that to the test!

Hi Manny

Sorry to hear of your situation - I hope that the unions will prove helpful with your work situation.

Like others have said, it is good to become aware of lymphodema early on as it’s easier to manage. When it is mild (mine is too), it can be very hard for relatives to understand what the fuss is about. My husband says things like ‘I can’t see any difference’ and ‘don’t worry about the sleeve’ - not because he doesn’t care but because he knows I worry about it. The thing is that unless you have it, it’s impossible to know how lymphodema feels and also the plan is not to let it get any worse if possible.

On a positive note, I was diagnosed with it in November last year and at my last appointment my arm was right down to smaller than right arm. I wear a sleeve most days, I do SLD every day and exercises. I can and do have some days where I don’t wear my sleeve and never wear it in the evenings.

Elinda x

Hi all can you help finished all treatment a year ago 2 ops chemotherapy n rads but hav developed lymphodemia in my breast my arm gets slightly swollen n heavy but my breast is so swollen Tht despite havin a lump out it looks like a boob job itshard warm very uncomfortable n sumtimes painful. When I take take my bra off it’s like a baked ham. Haha so as soon as I come home I go braless saw Th doctor last week they’ve done a mammo n scan n said thers no more lumps but said iv got lymphodemia n I’m waiting for sum physio no apptment yet hav been on esa but they stopped it a few months ago I appealed but kno it’s no good but get Th £65 per week until. I kno this is cumin t an end soon so hav been looking at jobs but won’t b easy with more appointments n feel so uncomfortable is ther any extra help or advice please. Rozita xx

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Just to echo Norberte, lymphodema isn’t usually hot unless there’s an infection. I think you need to see a lymphodema specialist asap not only to confirm the diagnosis but to help you with managing it.
In the meantime, i’d definitely go back to the GP to see about antibiotics. If you do have lymphodema you don’t want to develop an infection there. Elinda x