I hope you are all doing well and looking forward to 2014. I know I am! New beginnings!
I just wanted to do a little post about my experience of lymphoedema in case it helps anyone else.
After my rad hyst and lymph node removal (5 months ago) my groin / pubic area was quite puffy on the right hand side. It did go down a lot but has always been a bit puffy! My ankles also swell now and then. I mentioned it to my GP and also my consultant at my 3 month check. My GP kept saying it was early days from my surgery and I needed to wait for it to settle and my consultant said it was lymphoedema but it wasn't too bad so let it settle and it might get better and wear Brigette Jones knickers for support......
Hmmm, I'm the first to admit that I'm a bit vain, lol. I hate big knickers and haven't had to wear support knickers yet so thought, jeez is that it! Is there nothing I can do?! Well , yes there is! I found out that there is a lymphodema clinic at my local hospital and told my GP to refer me. The appointment took 3 weeks to come through (which I didn't think was too bad). The specialist nurse there was lovely! She confirmed I have mild lymphoedema and is going to help! She has given me support tights and stockings and is going to give me some knickers (I know, but at least they also come in black, ha ha). These are better than the tights etc you can buy at M&S and the thickness etc they give you depends on the amount of swelling you have.
I have an MRI scan next week as part of my 2nd 3 month check. Once that is confirmed as clear we will start on manual lymphatic drainage massage and 'taping' techniques. She has booked me appointments once a week for all of February. The aim will be to reduce the swelling as much as possible and then for me to be able to manage it myself going forward.
My lymphoedema is pretty mild. But if lymphoedema is not managed then it can get worse and is of course not curable, so you have to make sure you do everything you can to stop it getting advanced. I'm so glad I got referred. I did loads of research and these guys really helped: http://www.lymphoedema.org/
So ladies, you know your own bodies. If you have any swelling that you dont feel is right then make sure you get it checked and don't be fobbed off.
I'm still very puffy and my consultant just tells me it's post surgery and to be expected. It's over 9 months since the op and my left leg definitely swells more than the right.
The consultant seems to just laugh off every thing I mention as not real issues....might try my GP now.
I did feel like I was making a bit of a fuss to be honest, but the puffiness really bothers me. The lymphoedema nurse said I did absolutley the right thing in asking to be referred. There is help out there and better to catch it before it becomes a real problem.
Yes, do push to get referred. I struggled to get help from my GP practice (they didn't get it) and ended up having to ask my consultant to refer me. The clinic told me that your CSN can also refer you.
Lymphoedema is an incredibly common side effect of lymph node removal as part of CC treatment and help available varies hugely from area to area as services are very limited. I think we need to raise the profile of it a bit more in our community here - not to scare anybody, but to make sure that people seek help early if they think they might be affected.
I posted a few weeks ago about the help I have had from work to adapt my workstation to allow me to elevate my lymphie leg more easily and to pop out for regular little walkies during the day. That other post includes details of the government scheme that covered the costs of my new chair and leg rest because I work for a small organisation.
I have also managed to buy some nice long skirts and palazzo pants and adjustable calf width boots in the midwinter sales so I feel a bit less lopsided now. Still waiting for my sexy compression tights to come through but hopefully they will arrive soon (I am so tall I had to have them specially made, I get 2 pairs every 6 months on the NHS - just as well as they cost £87 a pair!)
In terms of massage, my nurse said that she could show and teach me how to do the simple lymphatic drainage technique but she said it wasn't very effective. If I want to try full Manual Lymphatic Drainage then I'd have to do that privately as they don't offer that on the NHS in my area. It's quite expensive so I'm going to wait and see how I get on with the tights and then decide what to do next.
i am still puffy in the groin area 3 months on so will keep an eye out. Fingers crossed it will not come but I will keep these posts in mind incase it does..
