In the Meantime
The diagnosis of lymphedema was just the newest of my problems. I had extremely tender feet, the result of chemotherapy induced nerve damage. I had fatigue. I had fears of the cancer returning. I had difficult relationships and emotional problems, and I had losses and disappointments. Now I had lymphedema. To top it all off and to be the straw that broke the camel’s back. Shit.
I quickly found out that basically I was on my own. I took my swollen arm to the Dr. twice. He prescribed a diuretic on my second visit because the first appointment we discussed if the swelling might not be the result of an insect bite. I realize now that I knew that this was lymphedema but I was fighting that knowledge, I was hoping against hope that I would be mistaken.
I remember during the second appointment, when the doctor asked me why I was so upset. Then he asked me, “Why are you so concerned about the possibility of lymphedema?”
This was my first clue that lymphedema is a misunderstood condition. It certainly was not in his radar. I didn’t expect that the medical system that had served me so well during my cancer treatments would be such a poor resource with lymphedema.
By the time a month went by, the swelling had travelled from my arm into my hand. My fingers looked like fat little sausages. I was in significant pain.
I knew that my cancer hospital had a physio department and that they helped patients with lymphedema. I phoned them. They told me that I couldn’t just come up and get help; first I needed a referral. I didn’t book another appointment with my local doctor; I simply phoned in and told his nurse that he was to send the necessary referral. To his credit, he did. Then I contacted the physio department again and luckily I caught an appointment within the week. Someone had cancelled, or it would have been three weeks. I shudder to think of what might have happened in three weeks.
Later someone pointed out to me that it is too bad that I didn’t get the help I needed before my hand was involved. Too true. That delay cost me dearly, but I realize that my own reluctance to face lymphedema played a role. A person can’t look back, and I did as best as I could at the time. I didn’t know how strong I really was.
Do Not Knit
The words haunt me still. Right on the top of the page it said ‘Do not knit’. It pains my heart to this day to remember how that felt when I read this advice concerning lymphedema management. I had become enthralled with the ancient art. I was passionate about yarns. I devoured books about knitting; I dreamt of knitting projects and my needles were always clicking. I was devastated. Simply crushed. You might think I’m being extreme here, but it was like I had been parted from my love. I couldn’t knit.
Knitting was considered the worst of the small movement, fine motor skill, lymphedema aggravating activities. Then I learnt that most of my list of favorite activities matched the list of things I should not do.
I didn’t argue with the instructions. My hand and arm were in severe and constant pain and I knew I couldn’t live like this. I was right when I thought lymphedema is a life changer in the way that the cancer wasn’t.
I grieved knitting. I resented my knitting friends. It wasn’t fair. Those people who knew I was a knitter would ask after my activities with yarn and were surprised to see me tear up.
I have lymphedema. I would say and then I have to explain. I didn’t have the words. My friends didn’t understand but I couldn’t explain further. I felt alone and sorry for myself. I suffered through my days struggling to fill my empty hours, time that I would have spent knitting. Then I would retire frustrated and sad. Occasionally I would have lovely dreams where the soft lovely yarn knit into beautiful garments. I’d wake up crying.
I had to give up knitting but what was also evident that I had to give up thinking about knitting. I packed up all that I owned that related to knitting. I stopped haunting those sections of the library and the book stores, despite how unconscious my feet might lead me. I had to stop. I learnt to avert my eyes from knitted garments, lest my hands fondle the textures, lest my interest lead me to question the owners if they had knit the item themselves. I grieved some more.
Lemons to Lemonade
When life hands you lemons…and it will. Challenges come up all the time, for everyone. Have you noticed that some people rise quickly to face their challenges while others are sunk by every single little thing? I’ve been in both boats and I’ve learnt some things while I was there.
The absence of choice is part of the struggle to meet a new challenge. To realize that life has dropped another lemon in your lap is never met with ‘Oh goodie, I can make lemonade!’ Eventually the challenge has to be accepted and met.
I may not have chosen my restrictions concerning my lymphedema, but I’ve traded hobby work as my main creative outlet to a focus on writing. I grieved my losses, especially the knitting, but with that behind me, I have come realize my restrictions have given me an element of freedom. Yarns are no longer an irresistible temptation and the knitted projects are not waiting for my spare moments.
I am free of that and that is a huge advantage. I have that time and energy to write and I love it. I’m grateful now that my limitations empowered me to choose this version of lemonade.
“I learned to talk to myself with compassion, with courage, and as time passed, with confidence.”
I cannot skip around the fact that lymphedema is serious and the adjustments can be huge. But while I am serious, I do not want to be grim. Lymphedema is life-changing but not life-ending.
My lymphedema journey is and continues to be a challenge, but I am healthier now and more adjusted than any other time in my life. I believe lymphedema gave me the wake-up call. Good can come out of some pretty tough situations and I have proven that to myself. Sensing the possibility of good gave me hope. I took that hope and I held on to it. Do the same.