This is the story of how a stressful year could’ve turned disastrous. Anyone who has had a health scare will understand and hopefully I can provide some insight for people who may also suffer from lymphedema. It all started about six months ago when I noticed three or four swollen “nodules” under my skin around my jaw at the bottom of my left ear. At the same time, I had a swollen right tonsil and then also noticed two more swollen nodules, one in my left groin and another at the back of my head. I felt fine, terrific even. Infections come and go, but my body is resilient and I rarely get sick.
My first thought was that I had tonsillitis or strep throat, so I waited a couple of weeks to see if it would pass. But the nodules did not relent so I decided to see my GP. All I wanted was some antibiotics (which I usually loathe to take) to fight the infection and the story may well have ended there if the doctor had obliged. Instead, he told me not to worry and sent me to get an ultrasound of my neck. Before getting the results, Andrea and I decided that a second opinion was in order.
Off I went to see another GP in the city, once again thinking that he’d give me some antibiotics and send me on my way. This time, he gave me a look of anxiety and told me it was definitely not tonsillitis or anything that antibiotics would cure. He sent me for a blood test and a CT scan of my torso. My white blood cell count was normal, but the scan showed an enlarged lymph node in my right armpit. As I discovered, these swollen nodules were all lymph nodes. They are widely distributed throughout the body and act as filters for foreign particles as part of your immune system. They become enlarged when your body fights an infection or if you have cancer. That’s some range.
So there it was: my doctor was telling me that I may have cancer. Truth be told, I never believed it at the time. But then I started reading about lymphoma and leukaemia on the internet. My brain began to process all the information I was studying, but it was the personal stories that were the scariest. Some people had enlarged lymph nodes for months and were fine, while others had the same symptoms and were diagnosed with cancer. After the scan, I had an incision biopsy of the enlarged lymph node in my right armpit. This consisted of a local anaesthetic with the surgeon using a needle-type instrument and an ultrasound to get some samples of the lymph node. As is often the case with this type of biopsy, the results came back inconclusive because of an inadequate sample size.
What’s next doc? He recommended a haematologist who examined me and then said with a very stern face, “I want that node." He was of course referring to the one in my right armpit. I was booked in for day surgery (meeting my surgeon beforehand to discuss the procedure) and lay on the table waiting for the anaesthetist, who was running late. He injected me with something and then it was lights out. I awoke some hours later in a room filled with patients and then a nurse asked me how much pain I was in “out of a scale of one to ten.” I was pretty numb and can’t exactly remember what number I told her, but the morphine she administered made me violently ill about an hour later when I was in the recovery room.
The node was sent away for analysis and about two weeks of worrying later, the haematologist told me that the results came back as benign. There was no malignancy present, however, he still couldn’t tell me what the infection was. Unbelievable news! The ordeal was over. Well, part one anyway. Shortly after the surgery, I began to notice tightness in my right arm around the bicep. Over the next few months it would come and go. The tight feeling also moved from the bicep down to the forearm, almost like a dull pulling sensation.
Three months after the surgery and just before travelling to Hamilton Island to marry Andrea, the tightness went away completely. But after the second day in the humid conditions of northern Queensland, it came back. Upon returning to Melbourne it intensified and, at varying times, my forearm, wrist, hand, thumb, index and middle fingers were all significantly swollen. It wasn’t really affecting my day-to-day activities, but was quite uncomfortable nonetheless.
Back to the internet I went (what would I do without you, Wikipedia?) and figured out that I had lymphedema. It is a condition of localised fluid retention and tissue swelling caused by a compromised lymphatic system. Basically, the removal of my lymph node caused this to happen. Initially, I felt anger at the doctors for wasting my time. It seems to me all they wanted to do was cover their own behinds; looking for the worst case scenario instead of diagnosing me with a simple, but nasty infection. Not to mention that neither the surgeon nor haematologist informed me about the possibility of this condition after such a surgery. Maybe they didn’t know, maybe they were all incompetent. I was also angry at myself for not riding out the infection, but the swollen lymph nodes were really freaking me out. I mean, they can swell up after a mild head cold, but usually aren’t noticeable. The bottom line is that it’s done and I’m grateful that it wasn’t something worse. It turned out to be needless surgery but it could’ve been cancer that remained undetected until it was too late.
During the past month, the lymphedema really concentrated itself to my wrist, thumb and index finger. I’d wake up every morning with substantial swelling that only slightly eased throughout the day. With our world trip only weeks away, it was time to investigate further. My concern was not being able to control the swelling while flying on planes, visiting high altitude cities and doing strenuous activities such as hiking. I contacted the Lymphedema Association of Victoria and they directed me to the National Lymphedema Practitioners Register.
From there, I found a physiotherapist who specialises in this condition. It was beneficial to have some knowledge about lymphedema before the appointment, because the main thing I’d read about was the use of compression garments to manage the swelling. She explained how the lymphatic drainage system works, the importance of skin care (including the prevention of sunburn and cuts to the skin that can result in infection) and advised me that the removal of the lymph node had basically caused a blockage in my system at that point, hence the build-up of fluid in my hand. She showed me massage and deep breathing techniques, and how to stimulate various lymph nodes in the body. I purchased a compression garment for my arm (from the top of the bicep to just above the wrist), which I’ll use specifically for plane travel and prolonged exercise. She also recommended a colleague of hers that makes hand garments, who I then saw and bought another garment that covers the wrist and hand (leaving only the fingertips exposed).
Now I’m fully equipped with everything I need to control and lessen the effects of lymphedema while I’m travelling next year. As the therapist told me, I’m extremely unlucky to be afflicted with this after having only one lymph node removed. It’s the luck of the draw, but now I have this unwanted travel accessory and must deal with it. She also said it’s a mild case of lymphedema, and there’s a good chance of complete recovery with continuous maintenance of my arm and use of the garments. But there’s also a chance that it will be with me forever. So I guess I’ll just strap on the backpack and go with the flow.
Additional resources for people suffering from lymphedema:
Lymphedema People: An online community created by and for people with lymphedema.
Lymph Notes: An online resource and support group for sufferers and their caregivers.
The National Lymphedema Network: An American website providing information, referrals for treatment and education.
Lymphedema Awareness Foundation: Website for eLymphNotes, the first online magazine on lymphedema
Blog of Lymphedema Specialist, Joachim Zuther
Hey did your lymphedema ever resolve ?
First time coming across this type of accessory….
I guess it’s better to have too many tests and find out it’s nothing life threatening 🙂 Must be a relief to know that all is okay.
Oh goodness John, we just had a cancer scare in our family and I know how much it can weigh on you while waiting for the results. Make sure you continue to have fun and I can’t wait to hear about your trip!
Thanks, Erica…glad everything worked out ok for your family too. – John
Sounds awful. I’m glad its not as bad as what it could have been though. Glad you are not letting it get in the way of your dreams