Lymphedema, the journal.


Swelling in the legs (and genitals) after groin surgery and cancer treatment is a big deal. Whilst I’ve had my fair share of swollen bollocks, I’ve been quite lucky with my legs.

I have already written about general inflammation and swelling, but this is a bit different. I want to talk about compression, and how it helped me. After being admitted to hospital with cellulitis for the second time, lymphedema became an issue.

Following a discussion with Prof Watkin about compression, I decided to try it out. It wouldn’t be the same if I didn’t keep a journal too…

Dear diary.

I have stage 2 lymphedema in my right leg. It’s crept up on me really. In the two or three weeks leading up to my re-admission to hospital, my legs had really started to ache. I noticed that my right calf was noticeably bigger than my left and my legs felt different. It was time to do something about it before it got out of hand!

As a quick reminder, I have had all the lymph nodes in both sides of my groin removed. I have had my pelvic nodes removed on the right side of my pelvis, but my left side is intact. Whilst I occasionally get sock marks on my left leg, it’s fine. Lymphedema only seems to affect one side of my body.

The professor is confident the swelling (or lymphedema) in my leg can be tackled. The lymphatic fluid needs to find new routes through my legs and the easiest way is to use compression. I’m starting by using simple, off the shelf kit. I’m not going to visit a specialist unless I absolutely have to.

The science bit

I’m using knee high compression socks like you’d get on an aeroplane for DVT. I’m also using standard grade sports recovery shorts. Mine are from Adidas but I have all kinds. They’re just like standard cycling shorts.

I’ll measure my calves and my thighs every night and I will measure them at the thickest point. I’ll measure my activity too, as any kind of physical activity has an effect on the amount of lymphatic fluid moved through my legs.

I’m using an Apple Watch to track my activity. I walk a fair bit, run when I can and I usually lift weights too. I haven’t done for a couple of months though.

Importantly, I only wear the compression gear during the day. I don’t sleep in it. I also only wear a compression sock on my right leg, as I don’t want to upset the other side if it’s working fine on its own.

Day 1: 29th November

Start of day calf measurements

R: 49cm
L: 46cm

Start of day thigh measurements

R: 70cm
L: 66cm

I’ve walked around 7km today, although that’s mostly round the house putting up Christmas decorations. Lots of stair climbing.

I have felt noticeably more energetic, bouncier! My legs ache less.

By bedtime, the measurements are promising. My right calf looked weirdly big against the left side this morning. Just using compression for one day, scrotal swelling has gone right down too. Alongside the legs shrinking back, the skin has really softened up.

End of day calf measurements

R: 47cm
L: 46cm

End of day thigh measurements

R: 67cm
L: 66cm

Day 2: 30th November

Noticeably smoother skin in the morning, less scrotal swelling. There aren’t any dents or pitting on my legs today!

The compression gear seems to make me feel lighter, like I’ve got a bit of a spring in my step. Might be a coincidence!

End of day calf measurements
L:45
R:46

End of day thigh measurements
L:65
R:66

My calves are definitely more subtle than they have been, and the hard patches at the top of my thighs are almost gone. I’m going to talk bollocks again. Mine are much softer. Where scrotal skin had started to go like cardboard, it’s now way better.

The progress made by wearing basic compression garments is incredible. It’s only been a couple of days!

I’ve walked 4km today. Lazy.

Day 3: 1st December

Looking in the mirror, my right calf is certainly looking more like my left. The veins in the middle of my calf are looking more varicose though! a big bundle of purple veins about the size of a 50p piece glowing through my skin.

I’m not convinced they’re the same though, it’s amazing how much difference a centimetre makes.

My balls are back towards the normal size now and I haven’t had any cock swelling in three days. They have more of a perky roundness too, like a softball. Maybe that’s just because it’s morning and it’s December.

By squeezing the larger muscle masses in my legs, it seems to take the stress off the genitals. Meaning that area can drain normally through whichever path works.

Only 5,000 steps walked today. I’m just not all that active at the moment.

The hard patch of lymphocele at the top of my right thigh is just a bump now, and it feels like it’s getting smaller all the time. My hope is that it just returns to normal.

The measurements are identical to yesterday, but I do have some bands and a bit of a dent on my right ankle/lower calf where the compression sock has clearly slipped down during the day.

Quick bollock update. More cardboard-y today, but also more the right shape and size. No cock trouble at all. Am I winning the lymphedema battle already?

Lymphedema dents and marks on my leg.  Caused by socks restricting the flow of lymphatic fluid.
Lymphedema dents and marks on my leg. Caused by socks restricting the flow of lymphatic fluid.
Day 4: 2nd December

I didn’t get much sleep last night, less than 6 hours. Everything in the business district is back to normal now.

One thing I’ve noticed during the day is tingling and hot patches. I think my nerves are all coming back to life.

The sock left another dent today where it has slipped down below my calf muscle, but it wasn’t as deep as yesterday

Measurements
Left calf 45
Right calf 46

Right and left thighs 65

That’s a huge difference from the beginning of the week. I’m actually beginning to feel a lot livelier too.

Day 5: 3rd December

It’s the first morning I’ve got up and thought my legs look like they’re back to normal. At least, they’re the same size!

I’m going to keep the compression going for a few weeks. To help train my body to find new routes to deal with the lymph. Then, I’m going to take them off and see what happens.

Another 5,000 steps notched up today, but I don’t feel like I’ve done much. Cheated on my normal diet a bit with two mince pies. It’s the first sugary thing I’ve eaten in a month.

Measurements
Left calf 45
Right calf 46

Right and left thighs 66

My calf measurements haven’t really changed for a couple of days now, but my thighs are a centimetre larger both sides. I have no rational explanation for this, aside from the mince pies!

Day 6: 4th December

Every morning when I wake up, I’m still amazed that I don’t have any swelling.

I’ve eaten against all my rules today. Lockdown restrictions were lifted, so we all went to Pizza Express. I’ve loaded up on pizza, and brownies! Oh and I mustn’t forget those two mince pies I ate before I came out.

Remarkably though, the naughty food hasn’t made any difference to my measurements. I was expecting things to blow up like a balloon.

Measurements
Left calf 45
Right calf 46

Right and left thighs 66

Day 7: 5th December

It’s the last day of my normal antibiotics today. From tomorrow I will be moving onto my once a day penicillin V tablet.

Nothing unusual when I looked at my legs this morning, although they’re starting to look a bit more out of shape. I should really get back to the gym, and back running on the road!

No change in my measurements at all. I did notice a big mark on my right leg where the top of the compression socks had been though.

After just a week of wearing compression gear, it’s made a huge difference. My legs are back to where they should be. I’m going to step the exercise up next week and see what happens.

Day 8: 6th December

Compression has definitely won me over. My legs are the same size now, and I don’t wake up with any cock swelling.

Now that I know I can use compression to control things, I’m going to keep using it for a month and then start to ease off a bit. I want to train my body to use the new routes to move lymph up my legs.

I’ve eaten really badly today, and still haven’t had any flare ups or inflammation.

Day 9: 7th December

Nothing exciting to report today. No change in the sizes of my legs despite trying to eat as much junk as possible. My body seems to be winning its (minor) battle against lymphedema.

*With a little help from a sock and some tight shorts*

I haven’t talked about my genitals in a couple of days, and whisper it quietly, but… Whilst my balls feel a bit thicker than in days of old, my dick hasn’t suffered with any swelling at all in the last week and a half. This is a revelation.

Day 10: 8th December

My legs are back to normal, in just ten days. I don’t know if they’ll look after themselves without any kind of support yet, but clearly that’s where I want to be.

I’m going to change up this compression thing and just wear full length compression tights all day instead. It’s so much easier to live with.

Day 11: 9th December

I’m happy this morning. I feel like lymphedema is another little battle my body has managed to overcome. If the only hangover from cancer is wearing sportswear every day and cardboard bollocks some mornings – I’ll take that.

I’m going to wear these tights for another two weeks and see what happens when I take them off. If my body keeps the swelling under control without any help, I’ll be cured!

One week on, 16th December

There’s no ill effects from swapping over to compression tights. My leg muscles actually look and feel more defined, like they should be. I haven’t gone back to the gym yet, and I really miss lifting big weights, but I’m going to try before the end of the year.

I really need to think about getting back on the road and getting some 5k runs under my belt too. That’s really going to put my legs to the test.

I have one more week before I take the tights off, and try and force my body to deal with the lymph on its own.

New tights! 19th December

I bought a couple of pairs of under armour base layer tights today. They’re so much tighter, and feel like the recovery tights I used to use after cross country or long distance.

It feels like I should have gone tighter, sooner – but I’ll see how I feel in the morning.

My legs feel so much fresher now. I actually feel like I can get out on the road and run again. So I do.

Back to normal, 23rd December

This morning, before going out on a run, I noticed that my legs had completely returned to normal. I’ve no doubt that things will happen now and then, things that I have to deal with – but today I’m back to normal.

No real scrotal swelling, no lumps and bumps, no hot patches. Merry Christmas to me!

My legs in under armour compression tights
My legs. After a couple of weeks of compression, and a bit of penicillin they’re back to normal. Yes, I know I look a bit like Mr Incredible. My secret is out.
Boxing Day, 26th December

It’s the end of the experiment, and the treatment has been a resounding success. I didn’t do anything fancy either. I’m on penicillin for the next few years, and that gives me a basic level of infection control. I just take a tablet when I get up and when I go to bed.

I had to buy a pair of DVT socks, and I found some basic cycling shorts in a drawer somewhere. It didn’t take long to discover that the compression tights did the same job, and they’re so much easier to live with. The compression socks just fall down, and they’re rubbish.

Hold on a minute…

It’s the morning of the 27th December, and the swelling is back. Only on my cock though, and it’s not like other people wouldn’t pay for that kind of thing. I can handle it.

I haven’t changed anything. I’m still wearing tights during the day and taking them off at night. I’ve started running again, and I’m working on my strength.

Two things are different. 1) I’ve eaten really badly over Christmas. I have consumed more meat, salt and sugar in the last week than I have done in the last year. I’ve also drunk a bit. Only beer and wine, and not huge amounts. Nowhere near enough to get hangovers, like in the good old days but I have drunk none the less. 2) I’ve drunk a lot of water. I had a couple of litres before I went to bed last night. In normal circumstances, (that’s new normal, not old normal) I wouldn’t drink water at all. I drink green tea and mint tea, and the odd black coffee or hot water with lemon. I get all my hydration from the kilos of green stuff I eat.

This leads me to think that my theory on inflammation is correct, and that sugar is the one thing that causes me more trouble than anything else. It’s not going to be the same for everyone, as different things affect different people. But sugar is definitely not my friend.

Drinking a load of water isn’t good for me either. The more I consume, the more my body has to deal with and that means more swelling. This goes directly against official advice, but that’s what I’ve found over the past few months. Whenever I drink lots of water, I get swelling.

So, in the absence of any more evidence, I need to cut down on the salt, so I don’t feel thirsty. Then I need to cut down on the sugar because my body doesn’t like it. I’m going to need some new vices.

It was all going so well…

Panic over, my body and I have reached an understanding.

It’s the morning of the 29th, and everything is back to normal. That’s the normal I had before I was last admitted with sepsis. No swelling, everything working as it should and as a little bonus, I can do as much exercise as I like.

Two weeks on, an update

It’s the 11th January now, and I’m well into my big fitness challenge for the first part of 2021. I’ve started running and working on my strength again, and I’m out every day.

I was worried that drinking a gallon of water, lifting heavy weights, running and walking a lot would really mess with my legs.

It turns out that I needn’t have worried though, as everything is going really well. The heavy strength work is visibly making my legs stronger, and they’re carrying me really well through the runs. I haven’t had any swelling at all. I’m still wearing the compression tights during the day, but it will soon be time to try a few days without them to see what happens.

Taking my tights off

It’s the 14th of January. My legs are looking and feeling pretty good, but they’re still heavier than I’d like sometimes. I went on a 10 mile walk yesterday, and took the compression tights off before I headed off.

Aside from when I sleep, I’ve worn them all day for a few weeks now.

This was a test to see whether I can ever get back to normal. Checking if prolonged exercise, or time on my feet without wearing compression tights causes the swelling to come back.

The good news is that the 10 mile walk didn’t seem to have any effect on them at all. I put my tights back on for a couple of hours when I got home, and took them off again for bed.

If anything, when I woke up this morning my legs felt lighter. I’m going on my first run without tights tonight. Long term, I’d like to do all my normal daily stuff, exercise etc without any compression. If I just need to wear them for a few hours in the evening, that’s fine for me.

Progress

It’s been a week since I took the plunge and started taking my compression tights off to run and walk in. So far, everything is working really well.

I only wear the tights when I’m sat around working or at home, but when I’m running or walking I don’t use them.

As my legs get stronger from the running (I managed 5km for the first time since treatment today), they definitely look better too. There’s no big swelling, or noticeable difference between the legs.

Over a few tough weeks I’ve reversed the lymphedema in my leg with a couple of simple things. I feel like if I keep up with the strength work, the running and the walking, it will stay like that.