“Lymphoedema stole my life”

It happened suddenly, I wasn’t expecting it at all. It was October 2020, I was 62 years old then. I was driving – I was returning from Limoges where I had gone to see my grandson – when my right leg started to swell. It has never gone down since.

Lymphedema, a sequela from which there is no cure

I suffer from lymphedema. I discovered it while doing research on the internet. This is a sequela of the hysterectomy I underwent to treat my uterine cancer. It was 3 years earlier, in 2017.

At that time, no one told me about this side effect of the surgery. A side effect from which there is no cure, as I ended up learning during a consultation at the Toulouse University Hospital where I am currently being treated. In any case, not completely, intensive drainage and compression stockings manage to reduce it by 10 to 15 cm. But it’s temporary. My “big leg” is still gaining volume.

Dispossessed of my life

I have a hard time accepting it. I fought cancer and I won. The doctors told me I was cured. However, the illness caught up with me. Years later, it takes over my life little by little.

Cancer first took away a job I loved: landscaper. I wasn’t able to do it during my 2 years of treatment and I was retired when I finished them.

Then, lymphedema forced me to give up my car. Driving was becoming too dangerous, I was no longer able to operate the pedals because of my hyper-inflated leg. Even walking has become complicated. Not to mention climbing the stairs. So I had to set up my house on one level and I use a walker to get around.

My wardrobe is also limited: I have the choice between wide pants and skirts to cover my deformed leg. As for shoes, I have to settle for horrible black slippers. In size 40 for the left, in 43 for the right.

A burden for others

Lymphoedema took away what I cherished most: my autonomy. I need a housekeeper to take care of my home, nurses to put on my compression stockings, physiotherapists to work on my balance and regain some flexibility.

I am dependent on others for all the little everyday things: shopping, going to the hairdresser, the dentist, posting a letter… I am only 66 years old but I have the autonomy of an elderly person.

Fortunately, I am well surrounded but it costs me to constantly ask for help. And not being able to reciprocate. I have 2 daughters aged 31 and 33. I would like to help them, play my role as grandmother. But this damn lymphedema is stopping me. Instead, they take turns coming to help me.

I feel like I’m a burden to them…

Live from hand to mouth

Today, I live day by day. I set myself short-term goals. One of my daughters understood this well. She regularly motivates me by challenging me. It started during chemo. She asked me to write an illustrated book on the art of being a grandmother.

Recently, she asked me to knit a blanket for one of her friends who is going to give birth soon. I’m not sure she’ll really need it but it gives me something to do.

Drawing to forget everything

And then I have the drawing. For that, I don’t need anyone. Or almost. To get to the weekly class, I have to find a kind soul to take me there. So I sometimes miss training courses.

But I can draw at home. I set up a drawing table in front of my chair. I draw, according to my inspiration, with watercolor or acrylic. I paint most often to thank the people who accompany me on a daily basis. It’s a way for me to feel useful. Physically, it’s sometimes complicated to sit for hours, but when I pick up my brush, I forget everything.