Lymphoedema snuck up on me… Some time after breast cancer surgery, my arm began to swell. Eventually, the swelling stopped reducing and became more and more permanent. My “fat arm” and puffy hand are now here to stay.
Even under normal circumstances, my Lymphoedema makes me furious. I am livid that the NHS gave me this problem while attempting to cure me of cancer, failed to cure the cancer, but has no effective strategies to help me manage this additional condition. My first experience of cellulitis made me even more angry. The experience highlighted just how badly I was looking after myself and the risks that I was taking with my health. My second episode of cellulitis, around six months later, made me realise that I had to do better…
I really struggled, but bit by bit, I found ways to have fun with the props and paraphernalia that come with this condition. I found someone who could get me compression garments in wacky colours, I discovered Nordic Walking could help, trained as an instructor, and crowdfunded to buy poles. I carefully built up a regular yoga practice and created a routine of appointments with my local hospice. I started to actively search for ways to help myself and I began to try harder to wear my compression garments regularly. I thought I had my Lymphoedema management locked down!
Sadly COVID-19 has dramatically blown apart all the routines that I had constructed to help keep this condition under control. When the virus was first talked about and every news presenter was repeating the phrase “wash your hands” I thought of my compression garments with dismay… Wearing a mitt that individually covers each finger and comes up to my elbow with a sleeve that covers that and extends to my armpit makes hand-washing impossible.
As the nation’s response to the virus deepened, I found that first my yoga classes and then my hospice appointments were cancelled. The exercise routine that I had built for myself to keep my lymphatics working properly has completely disintegrated and lockdown means that I am not supposed to leave my home. I am generally reluctant to wear compression garments but I have most success when I am going out because I have to deliberately get dressed to go, which reminds me to put them on. I now have no reason to purposefully dress in the morning, so frequently find myself remembering that I have not worn compression garments for most of the day in the afternoon or early evening. Often in time to dismiss putting them on at all, given that it is impossible to knit or draw once I am wearing them.
I relied on my local hospice for appointments to use their Pneumatic Compression Pump for around an hour each week. This involved my arm being zipped into a bizarre inflatable sleeve while the pump squeezed and released different sections to move the lymph fluid around and prevent it from building up. These appointments were one of the best ways to maintain a routine for myself, making me feel more accountable, providing a set time each week to check in on my condition and see whether I needed to make any adjustment to my maintenance. Unfortunately, this therapy was considered a non-essential service. My appointments have all been cancelled until further notice.
Although being outdoors in nature and exercising regularly are the best ways to stay well, those of us who are considered to be most at risk are now under pressure to stay in our homes to protect ourselves from this virus. Having been on cancer treatment for seven years, exercising is not something that I can easily pick up and put down. My stamina, flexibility, strength and coordination are all affected by my treatment. It had taken me over a year of careful effort to put together my pre-COVID exercise routine and I am left wondering whether I will be able to do this again…
My arm is now the biggest it has been for a long time. Coupling the removal of my management regime with time at home to do painting, gardening, cleaning, and a whole host of other activities that pull lymph fluid into my forearm has created a perfect storm. Lymphoedema makes the sufferer feel shame and guilt for not being in control. Some evenings I am overwhelmed to tears when I pull on the elasticated night time sleeve that I sleep in. Why can’t I do better?
There is currently very little support for people like me who are struggling with chronic health conditions. Routine is crucial to remembering when to take medication, exercise is fundamental to maintaining both mental and physical health, and face to face care is an essential component of our wellness. The Coronavirus Pandemic has stolen my toolkit. It has swept away the management strategies employed by anybody working hard to live well with a health condition. Experts warn of a secondary wave of deaths and health deterioration associated with but not caused by the pandemic…
The truth is that stage 4 cancer patients are not simply in the same boat as everybody else. Everybody else has joined us in a boat that we’ve potentially been rowing solo for a good length of time. We’ve already reconciled ourselves to life not going to plan multiple times… I have dealt with my ovaries being hoiked out leaving me childless, accepted my lack of career, recovered from having two litres of fluid drained out of my lungs, pushed through the pain of a fractured femur, weaned myself on and off morphine, and found strategies to live life with reduced mobility, yo-yoing health, and too many hospital appointments. When it was my own cells calling the shots there was very little I could do about it but now there are actual people responsible for pulling the rug from under my feet.
Stage 4 cancer patients are accustomed to balancing risk against quality of life… When a new treatment makes us feel terrible, we can wait and see if things get better or choose to stop the treatment and move onto the next one. Every medication and procedure comes with a consent form and we have careful conversations about our quality of life with our healthcare teams with such frequency that it begins to feel like the record is broken. COVID-19 is a bit like my cancer – it’s not going away! We are going to have to collectively work out how to balance the risks posed by this virus against the quality of life that we want to experience as human beings.
Swimming is wonderful for lymphoedema, because the pressure of being in the water massages and puts gentle pressure your affected area and your lungs also get a good workout. As the weather warms up, the murky London canal water begins to look increasingly inviting but I know that it would not be a sensible place for someone who is immunocompromised to go for a dip. It’s just too big a risk. Perhaps when we have blasted through all the cleaning and maintenance jobs on our lockdown list, we might finally pin down a design for that DIY hot tub I am so desperate to build…? Now THAT would improve my quality of life!
Here’s a blog by a friend of mine who clearly feels similarly; https://joy1975blog.wordpress.com/2020/04/13/who-stole-my-fcking-toolkit/?fbclid=IwAR38FuzpQBzGrzd1Y6VlRo7N0vlmKFBxT0BvOO5OmwBnAKc5X1CdgVrUaZw