Over the next few weeks, we will be blogging about cancer and ‘side’ effects.

We kick off the three-part blog series with a post written by Corinne Singleton, who was diagnosed with cervical cancer in 2016. She shares her story of living with lymphoedema.

In the next blog post, we discuss the language of ‘side’ effects and how it structures the illness experience for many patients, and in the final post, we focus on ‘side’ effects as being more than a relation to a ‘primary’ effect, and instead explore the argument that ‘side’ effects are relational in a variety of ways.

My Lymphoedema Journey
By Corinne Singleton

The 9 months from August 2016 to March 2017 were a bit of a car crash for me.
In July 2016 I’d taken early retirement from my job as a Primary School Teacher. I wanted to have more time to enjoy my passions – climbing mountains, enjoying the great outdoors and exploring the world.
Fast forward to the end of August when I was diagnosed with cervical cancer. Very tiny but very invasive. The word “disbelief” doesn’t really cover it. In fact, over 3 years later, I still expect a letter to drop through my door apologising for the mix-up with someone else. I didn’t feel ill, I felt fantastic. I was fit, healthy, happy. This was bonkers.
Within days, I’d had a total hysterectomy, removing my ovaries, cervix, top of my vagina and nearby lymph nodes, just incase. I was offered radiotherapy and warned of the side effects. Ironically, lymphoedema was the side effect I most feared (since it might mean I couldn’t get out on the mountains), but since the side effect of NOT having treatment was a potential return of the cancer, I decided to go for it.
5 weeks of daily, external radiotherapy and 19 hours of internal radiation later, I was declared cancer-free. I was no more likely to get cancer than anyone else! Whooo hoooo! I literally skipped out of the oncology department that day. There may even be CCTV footage of it.
My recovery went well. In no time at all I was back on the fells. My fitness returned pretty quickly and I looked back on it all as a minor blip. Life was good again.
After a couple of months, I noticed my upper thigh was a bit swollen and sore. There was no bruising, so I presumed I had strained it climbing trees or something. It stayed swollen for a week or two, in fact, it seemed to spread. Funny. It was tender too. Strange. What could it be?Then came the light bulb moment. The one when “Strange…” turned to “Oh shit!” (Am I allowed to use profanity?)
I popped along to my doctor’s with my self-diagnosis. She agreed. I’m afraid I was utterly dismayed. Not only could this take my mountains away from me, I was just getting over a divorce, following an abusive marriage. How would I ever find my forever man with such an incurable and disfiguring condition?
Luckily, my doctor’s practice is outstanding. I was instantly referred to the Kendal Lymphology Centre, run by a nationally recognised practitioner. Within a short while, I was seen by a Lymphoedema Nurse who explained everything, showed me how to do the massage, taught me how to look after my skin, the importance of raising my leg as much as possible, etc and ordered stockings. Reading some of the stories of fellow sufferers, I realise that I am extremely lucky in getting such prompt and excellent care.
I pulled my “big girl’s pants” right up and continued to climb mountains most weeks. I practised my self-care assiduously. It was hard and a huge mental adjustment but I had a strong word with myself. I was on top of this thing. It was a nuisance, nothing more. I could handle it. Positive and cheerful are my middle names.
I did notice that my leg swelled quite a lot more after 5 to 7 hours walking up and down mountains and even more so, after then driving over an hour and a half back home again (I lived just outside the Lake District). It took a few days of doing not very much with my leg raised, to get the swelling back down to its usual size. And over the next year, it did gradually become bigger and bigger, in any case.
The following year, in February 2018, I went to the Greek island of Chios. No, not the usual month for a Greek Holiday! I was going to help to set up and run a Children’s Centre for refugees. I had raised over £3,000 and was looking forward to trying to help some of the most deprived, disadvantaged and traumatised people in the world. It felt important that I should use my spare time and my skills to help.
Unfortunately, my anticipated 3 months on Chios, turned into just a couple of weeks. My Lymphoedema went completely out of control. My leg was swelling up at a rate of knots. My skin couldn’t keep up with it and was really sore. I was scared. I came home, ashamed that after all that wonderful support from my friends, I wasn’t able to stay and do what I had promised to.
Back home, it took weeks and weeks to get my leg under control again, albeit larger than it had previously been. But I gradually got there and set off climbing mountains most weeks again. Still suffering for a few days after each walk and subsequent drive home.
By this time, I was getting used to the quips, stares and jokes as I went around in shorts and dresses wearing one thick stocking. In fact I bought some purple Lymphoedema stockings just for the hell of it! People weren’t being cruel. They just didn’t understand. I decided to become a one-woman-mission to explain to them! (Seriously, I am my own worst enemy sometimes!) I’m not pretending I didn’t hate it. I did. It was horrid. But I was determined to smile and be chirpy. Being miserable doth butter no parsnips.
12 months later, I noticed my other leg was feeling left out. It obviously wanted some of the attention. The Lymphoedema had spread to both legs. At this point, the profanities I’d like to use could offend the more sensitive reader, so I’ll leave you to imagine them. Let’s just say I was a bit miffed. And hey! Let’s look on the bright side! I now had matching legs!
And today? I’m still climbing mountains. In fact, I have now moved house (from the village I’ve lived in and loved for 20 years and thought I’d stay in until I died) to be an hour closer to them – all because of the Lymphoedema. So that I can be home quickly to get my legs up. Where there’s a will…
Does my condition affect my life now? Yes. Every single day.
I have to plan my day to allow for time getting my legs raised enough. That means no long drives, putting my feet on the seats on public transport (and the dirty looks which ensue), 20 – 30 minutes of leg massage at the beginning and end of every day, wearing thick, black, hot stockings every day, all day. Struggling to find trousers which can get over my legs yet don’t fall down from my waist. I have given away all my shoes and started again, with what my mother would have called “sensible shoes”. I’m the one who sits to sing at choir, the one who has to get home after a trip to the theatre/cinema when my mates are going for a drink afterwards, because my legs are desperate to be raised.
I can’t work with small children anymore – I was intending to do this one day a week after my retirement. I can’t volunteer at anything involving bending, sitting down or standing up. Which is everything really. I have to explain my condition when meeting people for potential relationships. (This on top of dealing with the various other “inconveniences” that Gynae Cancer treatment leaves me with – incontinence issues, problems affecting my sexual function…)
I have to accept that I won’t be walking barefoot along a beach anymore. Or anywhere. On holiday, I swim in my stockings, because it is just so difficult to get them on again. I can’t sunbathe unless my legs are in the shade. Flights are possible but tricky. I need extra leg room and 2 or 3 days after the flight to rest with my legs raised, before I can start my holiday properly. Long haul flights are probably a no-no. Which is really sad because I was hoping to explore the world and volunteer abroad in my retirement.
And don’t even get me started on the number of times I get cellulitis, leaving me really poorly for a few days and taking horse-pill-sized antibiotics for two weeks at a time!
So, here we are.
Do I wish I didn’t have Lymphoedema? Yep.
Do I wish I hadn’t had all that radiation which caused it? No. Not at all. Lymphoedema is better than cancer, any day of the week.
And although my condition is far, far less of a problem than many Lymphoedema sufferers have to contend with, I do work very hard every day to manage. I am absolutely definitely one of the lucky ones, but I do have to be vigilant to keep on top of it. And my mood.
This thing will not beat me.