My post cancer surgery lymphedema journey...so far by Deb Cook

My genitals are really weird now. You know those colourful stress ball things where you squeeze them and they pop out in different directions? That pretty much describes my lady bits since lymphoedema came a-calling. I had vulva cancer in 2018, they decided to remove the lymph nodes in my groin and within days lymphoedema had set up home in what was left of my vulva and isn't going anywhere soon! Since last years awareness day the dreaded lymphie has spread and is now from the bottom of my stomach to the ends of my toes, and EVERYTHING in between. This is me for life now and trust me, it sucks!


After taking myself to the Maggie's centre for counselling to get over my dread of being looked at and touched 'down there' I am finally getting treatment at our nearest centre. The nurse was lovely but why do they all insist on looking at me weird when I describe the pain and say “lymphoedema doesn't hurt”. Really? I can see from your chicken legs that you clearly aren't a sufferer. No litres of liquid trapped in your limbs? No opinion!


With it being so widespread, and with my vulva skin being so roughed up from trying to escape the restraints of my extra wide gussets (knickers manufacturers please note; extra wide should cover area from leg pit to leg pit and not disappear inside the second it touches the Spanx!!) she decided in her wisdom to only give me something from the knee down. I also got a strange contraption to help me get them on. Point your toes like a ballerina, push through with gusto pull them up and voila! A very twisted American Tan coloured trainer sock without toes; no thank you. One trip to Amazon later and I'm the proud owner of 3 very sexy pairs of knee high socks is various colours and patterns.
Pros; my legs feel a lot more supported when I'm walking
Cons; my very expensive extra wide boots are now too bloody big for me and I walk with a wonk now and make a weird schloppy sound when I paid a fortune to look cool...
Joking aside, lymphoedema is a complete piss take.
•\tGet a garment to help one area and it makes another one worse.
•\tDoctors and nurses talk bollocks; it is bloody painful.
•\tWalking now feels like wading through treacle
•\tHolidays during the summer are an absolute no go as with lymphoedema your legs and feet will swell to elephantine proportions and you will spend the entire time trying to keep your legs up, sweating through your garments and reminiscing about the days when you could actually get a tan below the waist


There's times you get so frustrated that you just want to scream and cry and kick things but you can't get your bloody leg high enough ;0(


So that's how it stands at the minute. I feel like one of those kids puzzles where you have to match the legs with the bodies but I got Popeye's top and Bluto's bottoms.. What was a bad day a year ago is now a good day. But what can you do? You open your eyes in the morning, breathe, get through the day as best you can then do it all again the next day, and the next, and the next....


Before anyone says it YES I know I'm lucky to be here! YES I cherish every day and look at life in a totally different way but it's just so f**king frustrating. When you're lying in a hospital bed with multiple tubes going into you and drains coming out of you, planning what you are going to do when you get out keeps you going. Then you get out and your own stupid body won't let you do all the things you dreamed of. Don't give up though, fight it! Fight for your right to live your life on your terms after all the shit you have gone through it's the least you deserve. I don't see myself as a loser, I see myself as a compromiser. I still want to go on holiday so I go at the beginning or end of the year and don't fly for more than an hour. My fact each one of my legs weighs about 10st makes it difficult for me to walk far so, at 53, I'm taking driving lessons. I may never cycle from Lands
End to John o' Groats but I will go on a National Holidays mystery tour as my sense of adventure has reached a new high.
Cancer may not be the death sentence it once was but with crap like lymphoedema as a lasting reminder it's still a life sentence. But, like any life sentence you can choose to spend your days wallowing in misery and self pity of give it the finger and make the most of every moment. It may not be how you dreamed life would be but hey shit happens :0)