So, I have finally arrived at the Wittlinger Clinic in Austria. It’s a specialist lymphoedema clinic and training centre. They practise and teach the Vodder method.
How did I get here?
I first noticed I had lymphoedema in my right arm about a year ago. This was 5 years after Breast cancer treatment that included surgery (lumpectomy and axillary clearance), chemo and radiotherapy. I was on a hiking holiday in Italy at the time. It was the day after we’d arrived and we’d headed up the chairlift in the Dolomites and just started a fab walk on a path that contoured around a mountain. The air was clear, the sun was shining and the views were stunning. Then I noticed a strange sensation in my hand and forearm. I tried to shake it out, but couldn’t. I looked down and saw the swelling in the back of my hand. Shit! It’s lymphoedema. Of course, I had been told about it when I was undergoing treatment for the cancer. I had dreaded it and had been super careful and followed all the instructions. No jewellery on my right hand or arm. I switched to carrying my handbag on the left side, something that still feels strange so many years later. I had been minding my arm as much as I could. Prior to going on a long haul flight to LA in 2012, I had gone to a lymphoedema therapist and had custom-made sleeves made for the plane. But over time I’d had no problems and became a bit blasé. I hadn’t remembered to bring my (barely worn, 4 year old) sleeves with me on this holiday.
I racked my brain trying to remember all the dos and donts relating to lymphoedema. My poor friend didn’t know what was going on. I recalled that altitude could cause problems due to lower air pressure and we were at about 2,000 metres. I practically ran back to the lift with my arm in the air. I texted my cousin and a friend at home, both of whom have lymphoedema. They replied quickly with advice about compression, elevation, minding the skin. I was raging with myself for not having brought my sleeves. I wondered about cutting the holiday short and going home. But I was afraid of flying without compression. I went to a local doctor, but he could do nothing. I bought a bandage in the chemist and my friend bandaged me up everyday and we carried on. I knew exercise was good, so we got on with the hiking. It wasn’t a short stretch bandage of the type that I now know is needed. But it was the best I could do at the time. The arm didn’t improve, but it didn’t get worse either.
When I got home I went to the therapist who had measured me for the sleeves years before and she confirmed what I didn’t want to hear. It was definitely lymphoedema. And although it wasn’t “too bad” and caught early, it could not be reversed, it could only be managed. I tried other therapists (I’ve been to 4 in all), same story more or less. Wear the sleeve. Do the SLD. I’ve always been active, so I get a good bit of exercise anyway. I tried the SLD (the self-service version of MLD) for a while, but didn’t think it was doing any good, so I stopped it. I do wear my sleeve every day, though sometimes I wonder if it’s doing more harm than good. I dislike doing anything where my arm is bent with the sleeve on… brushing my teeth, putting on mascara, eating, sitting in the cinema.
Dr Oberlin from the specialist Lymphoedema Clinic in Germany, the Foldi Clinic, was at Lymphoedema Ireland’s open day last year. I asked him if he thought I would get any benefit from going to the clinic, or was I “not bad enough” as I’d been told. He very kindly took a few minutes to talk to me and look at my arm. First of all, he said my sleeve was the wrong type. Secondly, he said I’d benefit from bandaging up to the elbow a few times a week and that I could learn to do this myself. Only one of the 4 therapists I’d been to suggested bandaging. The others said…. “you’re not bad enough”.
I was determined to get to the Foldi Clinic, be seen by a specialist, and learn all I can about bandaging and anything to do with looking after my arm. You can refer yourself there if you can afford to pay for it. You may need to email them photos of your limb so they can estimate how long you need to spend there. But they are booked up quite far in advance and you may have to wait a few months for a place. They suggested I go for 3 weeks. But I could only afford one. I thought one week would still be useful and wanted to try it. Then I heard about the Wittlinger Clinic in Austria. I looked up their website, and lo and behold, they have a “Taster Week” (which is 6 nights) that costs €805. Your travel costs are extra. But it’s in the Alps, so I decided to go there for my “holidays” this year.
So that’s the long story about how I got here! I just checked in today and it is very nice indeed.
I have been given my programme for tomorrow and I am very excited about it all. What I really want to get out of it is to know for sure that I’m doing the best I can for my arm. And that I’m not doing anything that is causing more damage.
For more information on the Wittlinger Clinic, see their website: www.lymphedema-clinic.com
Tune in tomorrow to find out how I get on!