Cat on lymphoedema after cervical cancer treatment

I went for my smear test as usual, when I was 34 in 2019. When my results came through with "abnormal cells" I was terrified. It's a scary thing to be told and as a long term anxiety sufferer, my mind played havoc with that information. I was invited for a colposcopy at my local hospital and they did a loop biopsy. It was oddly quite interesting to find out more about what was going on and they explained it well.

"I was in no way prepared to be offered a hysterectomy at 34!"

After the biopsy was taken, I was called back to discuss my results. Within the biopsy, they'd found a 3mm deep by 5.8mm diameter cancerous lump. It was fully contained within the biopsy but due to the nature of the results (and changes to grading), it was sent to a panel for discussion.

In September I attended another hospital where I was told the panel wanted to operate. I was given the choice of another colposcopy and lymphandectomy under general anaesthetic, or a full hysterectomy plus lymphandectomy. I don't intend to have children but was in no way prepared to be offered a hysterectomy at 34! I opted for the first option as it seemed less intense, given they thought they'd removed the cancer already.

My operation date came through incredibly quickly and by mid-September I was admitted to the hospital. They expected the procedure to be very quick - simply remove the lymph nodes around my tummy/groin and all would be good. However, I suffered complications during the procedure. 

"They'd taken 21 lymph nodes from my tummy"

They discovered I also have endometriosis so my lymph nodes were kind of stuck in place by the sticky endo cells. It took them (if I remember correctly) about 4 hours to do the operation as a result and I was very groggy and slow to wake up from the general anaesthetic.

Once coherent, I learned about the endometriosis and they'd taken 21 lymph nodes from my tummy/groin through 5 openings (tiny keyhole surgery). They didn't find further signs of cancer, thankfully.

The recovery was been difficult. One of the incisions was through my abdominal muscle, so that was incredibly painful. I ended up in the hospital for 5 days, which was a fair bit longer than I expected. I could barely walk and relied heavily on my fiancé to dress me, help me into the shower and other day to day tasks. It took about 3 weeks for me to be able to lower my pain meds and bend my abdomen.

"I've been battling increasingly bad lymphoedema"

Things have got a lot better, but I've been battling increasingly bad lymphoedema since the operation. A mere 3 months after the operation I was approximately 4kg heavier and my tummy, groin and left leg, in particular, were quite swollen and numb still.

My gynae team referred me to the local Macmillan Cancer Support service to help with my lymphoedema. Unfortunately, I was only able to see them once before everything was closed due to Covid. I know that I’m able to call them if I need them, but it’s not the same as seeing someone in person. 

Covid has also been difficult because I really need to avoid getting it. Anything that makes your immune system work harder will affect your lymphoedema and make it worse, so I have been very careful. 

"Despite Covid stopping these services, there have been lots of things I can do at home"

The specialist I saw before everything closed had a physiotherapy background and she was fantastic. Even though she had no before and after pictures, she measured my bigger leg and put dots on every inch which was bigger than the other one. I’m told that my lymphoedema is quite mild, but it definitely does have a big impact on my life. Even though I’ve had lymph nodes removed from my entire pelvic region, it’s worse in my left leg. I used to be a size 10-12, now I’m a size 16 in jeans. 

Despite Covid stopping these services, there have been lots of things I can do at home or simple changes I can make. For example, the skin on my leg can get really tight. Bio-Oil has been really helpful for relieving this feeling – it’s quite expensive but I’ve found that it lasts a really long time as you only need a few drops. Body butters work well too, but because the skin is very sensitive, it’s best to avoid chemicals and perfumes that might irritate it. This is also a great way to minimise the stretch marks you can get due to lymphoedema. 

I’m also very careful about getting any scratches or any kind of infection. For example, when I go on my hikes I now make sure that I wear full full-length leggings because any tick bites or any scratches could lead to quite a serious infection.

"I can wear the form-fitting clothes I like to wear"

I was told that I should wear skirts, or long and baggy things, but these wouldn’t work for me. My job as a nature photographer entails lots of hiking and I need to be able to get down on the ground. Plus, skirts really aren’t my style. Jeans don’t really work for me anymore, but I wear a lot of leggings so I can wear the form-fitting clothes I like to wear. 

I’ve also had to change the kind of underwear that I wear. I used to wear pretty standard briefs but I find that the elastic pinches and can create a bulge, and it’s really uncomfortable so I go full ‘Bridget Jones’ style and I wear FlexiFit full briefs which have made a huge difference!

"If you try something that doesn’t work, don’t give up"

I have also found lymphatic drainage massages really helpful – not only for the beneficial impact on my leg, but it’s also really relaxing. It’s not available on the NHS where I live but I found someone local who is fantastic. The next stage would be that the lymphoedema specialist shows me how to do the drainage massage. I’ve been trying to copy YouTube videos, but it’s difficult because you need to know exactly how much pressure to apply. It needs to be gentle but firm at the same time so it’s quite tricky. Ideally, when we’re out of lockdown, I’ll attend with my partner who can learn how to do it too.

For me, the best thing of all has been walking. I think nature really helps your mental health as well as the action of walking, which gently pumps the lymphatic system. I don’t find elevation particularly helpful, but I know that lots of other people do – for me walking is much more helpful. I think that the most important thing to remember about lymphoedema is that it’s incredibly individual. If you try something that doesn’t work (like elevation or compression, which I don’t find very useful), don’t give up. There is no one size fits all approach, and you have to try and find things that works for you. It is something that can be managed, so keep looking for alternatives and things that help you personally. 

If you are looking for more support or information about any aspect of cervical cancer, here's how we can help >