Inflammation and lymphedema (or we could just call it swelling)
Surgery, radiotherapy and even chemo disrupt the way that your body works. Things just get inflamed sometimes.
When you have had extensive surgery on your genitals, this is more than a bit of a problem. It’s the absolute last place you ever want to be inflamed – it’s just not right!
I always accepted that some things were just going to be part of life for a while. Sometimes, they could even be permanent.
I have two firm round patches at the top of my thighs, and the lymph just doesn’t drain from there. They’re not huge, but I notice them. 8 months on from the surgery, they are a lot smaller though.
There’s also a patch of skin above my waistband just feels different. It’s a bit like paper, crinkly and weak. You do notice really little things, and it’s easy to make them a big deal. I doubt anybody ever notices them really though.
Some days my balls feel like cardboard, sometimes they don’t. Sometimes, just one side of the testicles feels like cardboard. Occasionally its just a square, thick patch in the middle of my ball bag. Some days they’re completely swollen, sometimes they’re not swollen at all.
Wearing socks can make one of my legs fatter than the other one, but it goes away again.
Some mornings I might get thick rings of swelling around my cock, but it could disappear as soon as I stand for ten minutes.
Sometimes, when I wake up, it’s like my penis is made of plasticine and it’s a new quirky vegetable shape straight out of the supermarket basics range.
It’s all about the lymph.
The thing with this whole penile cancer experience is that no two days are the same! Every day is a gift… Things do get better over time as your body learns to adapt and push the lymphatic fluid around and find different pathways in your body. You’ll occasionally put progress back through something you’ve unknowingly done.
Your lymphatic system is a really important part of your overall immune system. When bits are removed, like the nodes in your groin and pelvis (in my case), has a huge effect on the way you fight infections.
I don’t think there’s been a time in the last 11 months where the glands in my neck haven’t been enlarged for some reason. It’s clear my body is having to work harder to deal with the extra strain of not having a full working immune system.
I took it upon myself to work out all the the things that could be causing my body to work harder, then cut them out. I wanted to give my body every possible chance of healing itself, without having to turn to long term medicines to manage my health. As it stands, I think I’ve been pretty successful on that score, and my body has responded really well to the changes I’ve made.
There are drugs that help. I’ve spoken before about how brilliant dexamethasone has been for me. Even if it’s just a shock treatment to get things under control when my body needs a hand. Ultimately though, your body has to find a way to fix the problems.
Some foods are certainly inflammatory, and we are all sensitive to different things. Just through a process of elimination, I’ve discovered that what you eat has a really big difference to how much my general (usually bollock) swellings affect me!
I know that if I load up on dairy, bread or anything sugary… that I’ll blow up like a balloon and it will be a problem for a couple of days. So, I’ve tried to shift all of my diet towards whole foods. (there are plenty of other resources on the internet about this kind of thing. I don’t want to preach about it – but it’s really made a difference to me!).
I’ve also changed from being a committed, three meaty meals a day man to only having any kind of meat once or twice a week.
How often I eat seems to make a huge difference. Clearly, after you’ve had lots of surgery and treatment, your body is weak and needs energy to repair itself.
I couldn’t handle the 3 or 4 meals a day, and discovered that the one meal a day, or OMAD diet really worked for me. It also helped me to lose some weight too. Basically, I consume all my calories in one hour every 24 hours. The rest of the day I’ll just drink black coffee or green tea. (no milk, no sugar)
This diet isn’t for everyone though. I did the research and decided to try it. It worked for me, so I’ve never gone back!
Just on green tea… Yes, it clearly tastes like shit. But, it would appear to have some kind of magical anti inflammatory properties of its own. Especially in my general testicular area, and I try and drink a couple of cups every day.
I have tried so many different things to help my body get itself in the best shape and repair itself from all the trauma it’s been through. Really cutting back on the meat and having only one meal a day. I have no milk or sugar or sweetener in drinks and cut down on anything that’s hard on the body. (for me it was dairy, gluten and sugar)
Removing all the extra work my body had to do made a huge difference to my quality of life when recovering.
Lymph isn’t pumped round your body like blood is. It requires muscle movement to push the lymph from your feet all the way up your body. I wanted to give my body the very best chance of finding new ways to move the lymphatic fluid round the body. Realistically, that’s by keeping muscles big and strong.
My thinking, was that the bigger my muscles were, the more they could absorb, and then when I went back to running, my body could handle the strain.
I found out the hard way, that some exercises are hard on your legs when you’re recovering from lymph node surgery in your groin and pelvis!
The first thing I would say, is that you should just take things slow. I really love doing big heavy compound exercises, like squats and deadlifts.
Big clean and press movements, overhead presses and bent over rows. Anything that uses your legs is potentially going to hurt if you take it too hard though.
The squats are exceptionally hard. My legs would often turn to stone when I first started to go back to it, even with small(ish) weights.
Running was always a big part of my life. Whilst I certainly wasn’t a competition runner – I loved getting out and about in the countryside near where I live to keep fit.
7 months on from my last operation, any kind of running for more than a few hundred metres seized the legs up, so I shifted the focus to walking instead before going back to running, a little bit at a time. However little I managed to do, it still really helped to move the lymph around.