Hi - Just letting of steam. Saw the surgeons Monday. I have had mild lymphodema. They have told me I can never go back to my ‘hobby’ as a swanherd. I have worked so hard for my licence and do a lot of work for the Wildfowl and Wetlands Trust and not just swans, geese and ducks as well. Now the summer has come I should be out in my waders catching, ringing and weighing all the new cygnets. I am absolutely gutted. It is a big part of who I was as you can tell by my user name.
I know it is trivial in the scheme of things, I am still alive etc. etc. and we should not dwell on the negative but I feel in full foot stamping and shouting ‘Its not bloody fair’ mode.
Phew that helped and at least I have my chickens!
Thanks Jacqui
Glad you have managed to get that off your chest … and it’s not trivial, if it’s part of your life that you enjoy and you can’t do it any more then you are right - it’s not bloody fair.
I think we are all entitled to a little stamping of feet every so often.
Even if you can’t get into the water and handle the birds, can you not still be involved? There must be things you can do which won’t affect the lymphoedema.
It’s been such a major part of your life,so the fact that you’re frustrated and upset is perfectly understandable. With mild lymphoedema you should be able to get to the stage of controlling the swwelling-but the danger lies in develping cellulitis, which could happen via even a slight cut, if you’re working with certain animals.Can you still help in some capacity-it would be better than nothing?
O that is such a pity Jacqui and I can understand how frustrated and disappointed you feel. I wonder, as Phoebe and Elaine suggested, is there anything else you can do? Thinking of you.
Feel free to rant, rave and stamp your feet - you are entitled.
Cycling has been a great part of my treatment and recovery but now my left shoulder is frozen and I have a trapped nerve in the right one and am VERY angry and bitter about this and the effect on my exercise schedule. Never mind the fact we’re still here - it goes without saying that we’re grateful, glad to be alive, yadda yadda yadda but it doesn’t mean we’re not entitled to a QUALITY of life.
I hope you get some releif from the Lymphodoema. I have had no support for my shoulder issues so I have paid privately to see an osteopath who has helped enormously but costs £1 a minute but it’s better than all the painkillers I was prescribed by my GP. Try and investigate exercises and therapies away from the mainstream because I read of lots of ladies who find help and relief outside of the teams caring for them.
Good luck with your fowl hobby and please, whatever you do, do not give up on it. It sounds to me like you could give a really interesting talk to the W.I.!!! I’ll book you …
Hi - I second that - you have every right to be angry, you ought to be angry, anger is good, (see article by Crombie on CCT website talked about on Dr Peter Harvey thread!!!) - if you are not going to be angry now when something so precious has been taken away from you when are you going to be angry? we absolutely have to ask the question: what has my life been saved for, and maybe there is an answer, but just “being alive” is not it. The consequences of the treatment, the treatment, I tell you, not the disease, the treatment - are serious, they are not trivial - we had the option of death or this, and we chose this or we would be dead, but this is not great. And there is no point calling black white or we won’t be able to tell when we really are happy because we’ll be insisting through stiffened upper lips and gritted teeth that we really are ‘happy all the time’ - which I think would make us look pretty stupid.
Sorry, truly sorry, you can see I am still deep in a pit of anger issues!!!
But because (yuk) we are obliged to put the positive (yuk) side for political correctness nowadays (whatever happened to freedom of speech?), I will say this (yuk) - given that we have bravely ventured into the unknown territory that is ‘after cancer’ we all work bxxxxy hard at finding and creating for ourselves our ‘reasons to be cheerful’ - and I think we have to work a lot harder, sometimes, than ‘normal people’ - so please, please please feel free to vent and rant and weep on here, we are here to share your sorrows, and I hope, sometime if not today, your joys…
Hi Jacqui
One of my great passions is climbing (Mad I know! - especially with 3 little ones but hey ho and all that…) Several physio’s tut tutted me after my axillary node clearance and suggested I find a “new” hobby, mumbling about lymphodema risk. However I decided on balance to continue. I sought advice from a sympathetic lymphodema physio who fitted me with a sleeve as a precaution. I also have the full support of my surgeon who agrees life goes on despite BC. Are there any similar precautions you could take to enable you to continue? and is it worth seeking a second opinion to the person who advised you to stop?
Just a thought
Good Luck xx
I know just where you are coming from, had a similar conversation with LO Nurse. Now been given sleeve and gauntlet but as I’m only 7%, not using them yet. Been warned this is a preventative and should, but life has to have some joy in it. Someone on here who is a Lymph Odema nurse said in her place they don’t even give sleeves to people under 10%. That helped me to make the decision I have made for me.
Oh Swanie of course your angry and the anger must be more so because ,as Snowwhite writes so well, it is the TREATMENT not the disease that has caused this. The steroids gave me diabetes. I am so angry I feel dangerous! It is not fair.
I would explore different expert opinion and advice because it seems to difffer so much.
When a district nurse intervened on my behalf with the diabetes clinic I was able to cut down from 4 blood stab tests and 4 injections a day [which I was told were essential for my life] to only one of each. Not that this stops me being bl…dy angry but it is better than before.
There is no answer is there? I do hope that somehow you are able to find some peace or make some sense of all this.
Margaret
Gosh, I am glad I read this thread, its something I had forgotten about. The risk I mean. My arm has been a little more painful recently, although I excercise I had forgotten the getting a cut bit, I dig allotments and gardens! How silly is that.
Did you know that there is now a lymphoedema category? it seems to have appered overnight.
Down the left hand side just above ‘living with breast cancer’
Carol I also do a lot of digging and lifting heavy loads- infact my workload more or less continued throughout chemo etc.I did cut my finger quite badly once a few months after my treatment finished and when it didn’t seem to be healing after 3/4 days(the pain was getting worse even though there was no sign of infection) I took myself down to casualty and they put me on a strong course of antibiotics which thankfully put things right.But since then I’ve had a few cuts and scratches which have all cleared up on their own.I’m not saying ‘gung ho’ and throw caution to the wind (like I have at times)But lymphoedema is not inevitable after a cut etc.and thankfully the majority of us don’t get the horrible condition.
Thank you for all your understanding and kind words. I do feel much better today. At the moment I don’t think I can do the sitting on the bank and doing the writing part of the work , it would make me too sad. I am very hands on and loved the excitment of the catch, holding a swan is very special. Unfortunately it is not something you can do with gloves, gauntlets and stuff. I have talked to the BCN, the LO nurse and the surgeon - they all say the same thing.
I do garden and have an allotment, just try and remember to put gloves on and generally take care. The sunshines and the chickens are perky. Heigh ho, life is not so bad.
You are all champions and it is great that we can be here for each other.
