To be told by by my oncologist that some of his patients have far worse lymphoedema than me.
Short rant. Over now.
Anyone else?
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Well my oncologist hasnt made any comment. But I saw bcn the other day or rather way laid her while having herceptin about appt for reconstruction. She said ooh you’ve got a swollen arm! Does the sleeve still fit! Then asked me my name and date of birth! Since thought her lack of knowledge of me may be good! Maybe I am not that bad! But I know what you mean. Sleeves, massage, exercises etc etc a constant reminder. Not being able to wear just any old blouse anymore I find. A friend did say well it didnt look that either. But then she hasnt it got it either. And had Grade 1 cancer with only! a lumpectomy. I feel bad because nearly two years later I am still on treatment. A mastectomy seems worse to me than a lumpectomy. Sorry if I’ve gone on and maybe missed your point. Certainly over here (I think you are in France) there is skant help for lymphoedema when from what I read there is much more that could be done. Why isnt MLD offered when first dx to get it down when still manageable instead of leaving it until it gets bigger and bigger and hoping the individual can avoid this with SLD and exercises etc. Incidentally do these exercises I have read of on here that claim to reduce likelihood from 25% to 1% make any difference?
We (fellow lymphoedema sufferers) know how you feel and cannot thank you enough for ongoing support you give us even if you wish you didnt. ie by not having it in the first place.
Sorry for rambling.
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Argh …
I saw a surgeon once who asked me how I was and I said “things could be worse” and she replied “yes, but that doesn’t make it any better for you” - how in touch she was.
Bahons - you should have smacked him on the gob. he is telling you that you should feel better because someone else is having a worse time and that is schadenfreude and I’m sure none of us wants to indulge in that. He wants you to look on the bright side and here we go with “the preils and pitfalls of being positive” and the “tyranny of cheerfulness” and the other pressures to behave and feel as OTHER people want you to.
Feel free to rant, you deserve a rant and next time you see these flippin’ people have a rant or else they will never change and they’ll be imposing their views on the next weary patient.
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Hi both
Thanks for your supportive remarks!
Dahlia, if I’d socked every healthcare professional who had said this or similar to me, I’d probably be locked up by now. 
But yes, how I’d like to get some of them warmly by the throat…
BC surgeon (back in England) said I didn’t really have lymphoedema as ‘my fingers weren’t swollen’.
BCN said I wasn’t ‘that bad’ (and wouldn’t refer me to lymphoedema clinic until I got it in both arms - and then only after a struggle)
Lymphoedema nurse said I was so lucky she could spare me her valuable time as there were so many others suffering out there. (This, apparently, was a standard speech, delivered to each and every lymphoedema patient during what should have been an MLD session…she was removed from post after a barrage of complaints.)
I am aware that about 12-13% (I think - no-one’s worked it out since I came to France 2 years ago) in one arm and about 4-5% (maybe less) in the other, I could be a lot worse off. I don’t need them telling me. My aim is to keep myself that way.
The topic of lymphoedema came up with my French onc because I asked (if you don’t ask, you don’t get, I always say!) about my pie-in-the-sky dream of a lymph node tranplant - they have been carried out in France for a while now.
To be fair, he is a nice, approachable man and while he was googling it for me, he said this. My reply was that I’d got in both arms, I’ve had it for 13 years and I’m extremely fed up with it (I’m working on the French for 'I’m b****y fed up with it) and that I really felt my quality of life is fairly drastically impaired and the only reason I a) cope so well and b) have it more or less under control is that my OH is always around if I need him to do the no-no stuff.
So…I’d really like to keep him onside…!
I was in the NHS lymphoedema system, such as it is, before I left and yes, there isn’t much (altho, it’s somewhat better than it was 13 years ago when I first developed it). Treatment generally isn’t more advanced here in France, but it’s definitely easier to get, with GPs, oncs, surgeons, happy to write a prescription for MLD which you can then take to the physio of your choice who bills the French Health Service directly. Pharmacists here are very highly trained and will measure arms for custom made sleeves, fax the order off and have them back ready in a week.
You are right, Starfish, the arm should be brought down in size as a number one priority. Number two priority is to keep it that way. Active intervention is needed, not the passive issuing of sleeves and tired photocopies of exercises and SLD and fingers crossed it doesn’t get worse. There’s a long way to go…
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