I was diagnosed with cervical cancer and then found out that it had spread to my vagina, bowel, bladder, 1 kidney, and the lymph nodes round my lower stomach in 2012.
I had radiotherapy treatment, which worked and I'm all clear.
Both cancer and treatment have wrecked my body and I'm left with a few health problems, including lymphoedema.
A few months after treatment I was having problems walking. It really hurt and i felt like my hips and thighs were congested and could only move in little steps. I just thought it was probably just because the cancer was located nearby inside me.
I had been in contact with my Macmillan nurse, who are amazing and supported my every step from my diagnosis. And she suggested that I could go for complementary treatment in their centre at wythenshawe hospital.
I was assessed there and it was arranged a physiotherapy session with a physio-lymphoedema specialist nurse. She immediately knew what it was and what to do. She pretty much gave me all the information and made sure I understood every little point. It was so comprehensive that I still use all that knowledge to this day. She advised my doctor to prescribe medical support tights which I have worn every day since. She also taught me manual lymphatic drainage and skincare exercise etc.
I believe that if it wasn't for McMillan and their centre (which looks like a little log cabin) I would still be suffering with it now. They said it would never get better but I could stop it getting worse. I DID make it slightly better, though. My legs were regularly measured until they stayed settled.
I feel pain every day but I'm still aware that it could be so much worse. I try my best to not break the skin on my legs and keep my weight down and to elevate my legs when they swell. It's a pain in the summer when they get worse in hot weather but every year it gets easier because of all the techniques I pick up. I make a spray with cold peppermint tea that is brilliant!
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.
I’m a glass half full kinda gal!
So when I had to have two lots of surgery to remove cancer from my vulva and lymph node extraction I put the lymphoedema leaflet in my ever growing medical file. I left hospital with a vulva the size of a small continent and one node site weeping! At this point no one mentioned that leaky wounds usually need antibiotics and to remain covered! So unsurprisingly I became very right side swollen as I had an infection. We all assumed that the swelling would go down as the antibiotics kicked in. However what then followed was a few months of a wound ejecting fluid in a very dramatic and terrifying way, swabs constantly taken to ascertain the correct antibiotic and pain in my pelvis, groin, buttock and pubis. Slowly the swelling subsided but my right side was , and to date still is painful and often swollen. It was at this point that lymphoedema was to be investigated. I had to be measure and probed for moisture levels to then be told yep I can confirm you have genital lymphoedema! Right I better dig the leaflet out and establish what this means.
In layman’s terms lymphoedema is swelling caused by a build up of lymph fluid in the body but if the lymphatic system is damaged or inadequate it cannot handle the usual amount of lymph and fluid builds up in the tissues.
So now I have to wear compression tights, slight issue I’ve been allergic to any materials other than cotton since I was a child! So I had to wait to have some special cotton ones made and when they arrive you get one pair, that you wear all day until bedtime. Pre operation I was a very flexible girl and proud that at fifty I could still do the splits and get myself in a crab position. Now I can’t even cross my legs! So getting compression tights on is like an Olympic event, coupled with the fact that half my vulva has been removed and I suffer from a chronic skin condition, vulva lichen Sclerosus. Which means I prefer to be commando and cool!
I’m only recently diagnosed so I’ve just started having physio, I’m to be taught massage techniques and my lymphoedema nurse is exploring the use of low light therapy.
I used to love driving but now it causes a dull ache and pain. Due to recovery time I am carrying more weight, which in itself does not help. To be honest it’s manageable but pretty exhausting and until now I’d been proud not to have had cellulite on my slim legs! I’m beginning to feel pretty gross about myself and everyday is a battle of what I can wear that’s comfortable and if I’m going to need pain killers to get through the days activities!
Zoe Breen aka ‘flumpy foof’
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)
Write something about yourself. No need to be fancy, just an overview.