I went to the Mt. Wilga Lymphoedema Clinic today for an appointment with Dr. Helen, the rehabilitation doctor in charge. Nick and I were with her for about an hour, during which she took my medical history and explained more about the condition, what they offer for treatment and what I could realistically expect in my own case. It was exactly what I had been looking for.
We then met with Andrea, the head physiotherapist. After taking my medical history, she explained in greater detail that lymphoedema is caused by trauma to the lymphatic system (eg lymph node removal and radiotherapy). It can be brought on by a variety of events, and stress can make it worse. Different people experience it differently, with some having swelling in the hand and others not and some having longer and more severe 'flare-ups'.
Andrea walked us through the program they offer in greater detail, talking about the daily massage and bandaging, gym, psychologists and nutritionists. She explained that I'll be wearing a compression sleeve and glove for at least 18-24 months daily and that I should think of it as me post-treatment medicine. She offered me a 4 week daily program (3 hours/day M-F), but given the upcoming school holidays, I'm only going to be able to do 2 weeks starting on 8th September.
We left 2 hours later and I felt like I had finally received a treatment plan that seemed to make sense for the condition. For the first time in weeks I felt a bit optimistic.
Nick and I had lunch before doing a bit of shopping and getting the kids. I spent some time catching up on admin while he did homework with Remie and organised dinner. It was a great break.
Poor Remie is still struggling, having screamed at least a dozen times at one family member or another. She's saying "it's too hard" and telling us she wants to be a baby. She opened up more tonight saying that it's hard having a mum with cancer because I have to wear my compression stuff and then I have to go to hospital for treatment all the time and can't do fun things with her. She also said she's worried that her classmates will make fun of her if she cries in class because she's worried or sad. That's an awful lot for a nearly-7-year-old.
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