Help… do any of you know if it’s normal for your whole lymphatic system to swell up after a full clearance?
I had surgery on Thursday (my chemo was cancelled while they check my lymph nodes) and I have a drain that’s working but I’m gradually swelling up. My ankles swelled up first but now it’s my whole legs and groin. My arm is really swollen which I’d expect but not everywhere.
A nurse was supposed to call me daily afterwards but no one has. I must have been missed off a list. I can’t get hold of anyone but will try 111 next.
I don’t want to spend a day in A&E if this is normal but maybe it’s not. Any ideas? Thanks, Kath x
So sorry to read you are feeling so uncomfortable at the moment, as this is a bank holiday I think you should call 111 now for advise (I’m not medically trained to give advise) however I think you need to speak with a doctor.
I would second @Tili’s advice and try to get some help - believe me I know how frustrating and difficult this can be over a Bank Holiday . If there is an iheart or NHS111 online service where you are this might help. I was able to get an appointment with a Dr. out of hours for my partner via NHS online when he had an infected knee over Easter and was able to use the iheart service at Barnsley when I was staying with my parents some years ago and was contacted by work to say I had been exposed to a bug and needed to to have antibiotics. In both cases those services worked out of or adjacent to A+E but were not part of it - we didn’t have to book in or wait we were given an appointment . On another occasion I went to A+E and was given an appointment time the same day to be seen in Minor Injuries - that was the only time a Dr. was not present .
At a support group meeting the Lymphoedema Nurse explained that sometimes Lymphoedema can present in the opposite arm because the fluid can get shunted to that side however I’m not aware of anyone complaining of generalised swelling as you describe . The surgery is a systemic shock though and can do weird things and the other possibility might be a reaction to something you have had in hospital. If you have been given a number to call at the Hospital if you have problems I would also try that as some Hospitals have a service whereby patients who have been recently discharged can get help without having to go via A+E . Xx
So sorry you have to go through this now over the holiday. LIke TIli and Joanne it’s best to contact 111 and they will give you instructions on what to do. Im not medically trained so I can give little advice on swelling. When I had a swollen ankle I used ice but that was an in jury.
Strength xx
Thanks @Tili@JoanneN and @kellya
All the numbers I have for surgery are either not answering or closed for bank holiday. I did have the chemo emergency number as I was booked for chemo before it was cancelled in favour of more surgery.
I spoke to them and they confirmed that an oncologist would call me back this afternoon. No one has called yet so I’ll try them again.
It seems like such a specific thing I just know someone will know if it’s an issue or not but I can’t get to the right person.
Thanks for your help though. I’ll keep trying
Kath x
So sorry you weren’t able to get any help yet . I know we all hate to go to A+E but if you start to feel unwell at all just go anyway. Its hardly the same but I suspected I had broken a couple of toes the other week and spent a day and a half procrastinating before finally heading there . Xx
An oncologist called me eventually and basically she thinks is may be a reaction to the surgery causing a shock to the system and as long as there are no signs of DVT or infection (which there aren’t) and as long as the swelling doesn’t get worse (I think it’s getting a little better) then she thinks it should settle down.
I feel happier that it’s not dangerous but no one can figure out what to do about it to fix it.
She recommended more mobility so I’m walking more.
I still feel like I’m wearing wellies full of water but I guess we’ll see. Thanks for all your help
Xx
It’s pretty much all gone now. I was advised to look for DVT or signs of infection and go to A&E if either developed but on speaking with the BCN on Tuesday she said it’s unusual but probably a reaction to the surgery.
I’m feeling much better and so glad it’s gone down.
Lots of rest as well as walking needed to aid recovery. Xx
I always got everything checked out just to be on safe side. Hopefully if you’ve called 111 they have advised what you should do