Perseverance – By LSN member, Christine
I first noticed my swelling at the age of 15. I was very athletic and played a lot of sports, including swimming and hockey, but my legs started to get bigger and I seemed to put on weight more easily than my friends. I was teased a lot, as I had a very tiny waist with this big bum and legs, which was obviously difficult for me. But the school sanatorium put it down to me being an athlete and nothing more.
I went on to have my daughter in my early twenties and during that time had a lot of trouble with my legs. As part of my antenatal care they issued me with support stockings but no matter what I did my legs got bigger. I exercised like mad, tried diet clubs, everything.
A couple of years later, I was pregnant with my eldest son and had my first bout of cellulitis. From that time on I would get cellulitis at the slightest knock. I went to the doctors and they had me in such a spin because they seemed to blame it on the fact that I’d had a troublesome background, being a foster child, which exacerbated the whole situation for me emotionally. I didn’t know my full medical history and instead continued dieting stringently and feeling like it was my fault.
It got to the stage where I’d walk 50 yards down the road and have to sit down because my legs were so painful and heavy. So in May 2011, I went to a new doctor and he suggested a dietician. They weighed me and got me to fill in a food diary, which I did absolutely to the letter because I wanted to help myself. I’d had bouts of depression and at this point I was about 18 stone at 4ft 10inches – it was exhausting.
One week it was really hot weather and I’d put on eight pounds. He looked at me and said that I couldn’t have put that much weight on in a week unless I’d been lying on my food dairy. I explained that I was being truthful and asked if he could give me some exercises to do. At which point he gave me a resistance band but discharged me because it was ‘obvious’ there was something amiss. The suggestion being that I wasn’t telling the truth, which was obviously very distressing.
In the August of 2011 I decided I’d had enough and went back to the doctor. Luckily for me, I saw a locum – he looked at my legs and straight away said he thought it was lymphoedema. He referred me to a clinic and I was diagnosed with severe bilateral lymphoedema. Even now I can still feel the shock. For 50 years I’d endured all that degradation – now I was justified that there was actually something wrong!
I went every day for weeks to have intensive bandaging. I learned that walking with the bandages on would help, so would go for a walk wearing carrier bags over my feet. Of course they would have to be matching carrier bags! I was then moved into compression garments, getting new ones as my legs got smaller.
I was determined not to let the condition stop me. Whereas it has previously curtailed my social life and just taken over everything, I now had a reason for it. I even bumped into the nutritionist who’d accused me of lying and was able to prove him wrong!
Then, on Christmas Eve 2016, I was sadly diagnosed with breast cancer. That changed everything because I had to make a terrible decision. Because of my history and my lymphoedema being so severe, I decided that an operation wasn’t for me, as healing afterwards would be too difficult. Instead I’m taking drugs to keep the tumour under control.
The best part of the whole thing was that I was referred to the lymphoedema service at my local hospice. It was then that the practitioner told me I also had lipoedema, which was the underlying issue to all of it. I felt so angry about the negligence of previous healthcare professionals that had resulted in me being in this position. Why hadn’t somebody picked it up 20 years ago?
People have found it very difficult to understand why I wouldn’t have surgery for the cancer. But I’m 75 now and I’d rather spend what time I have enjoying life. For me that involves singing, which I not only love but is good for your lymphatic system.
I hope now that with greater awareness there will be better training for healthcare professionals so that others don’t have to go through what I have. If you feel like no one is listening to you, persevere and get the right diagnosis. It might change your life for the better.
“I was determined not to let the condition stop me.”
Lymphoedema and my love of climbing – By LSN member, Corinne
The 8 months from August 2016 to March 2017 were a bit of a car crash for me… small understatement there!
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 and enjoying the great outdoors.
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 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 and happy, this was bonkers.
Within days, I’d had a total hysterectomy, removing my ovaries, cervix 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.
Following 5 weeks of daily, external radiotherapy and 19 hours of internal which is not as bad as it sounds, honest, I was declared cancer-free. I was no more likely to get cancer than anyone else. Whoo hoo! 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.
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 s**t!” (Am I allowed to use profanity in an esteemed journal like this? Editor’s note; erm, no…)
I popped along to my doctor’s with my self-diagnosis and 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 bit 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 live 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 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. I felt it was 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 but 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 with one stocking. In fact I bought some purple 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 would certainly be rejected by the editor, 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, any day now, I will be moving house (from the village I’ve lived in for 20 years and thought I’d stay in until I died) to be an hour closer to them, so that I can be home quickly to get my legs up. Where there’s a will…
And I’m still looking for my forever man. I tell any potential suitors about my legs and to be honest, they don’t seem to care on the whole.
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 of you suffer with, I do work very hard every day to manage it – massage, raised legs, stockings – you know the score. I am absolutely definitely one of the lucky ones, but I do have to be vigilant to keep on top of it.
This thing will not beat me.
“I do work very hard every day to manage it – massage, raised legs, stockings – you know the score.”
My lymphoedema story – By LSN member, Diana
I grew up in Portsmouth – a flat city – walking everywhere and assumed that when I went to University in Exeter, I would still enjoy walking. On the first morning, a gang of us toiled up the very steep hill from our hall of residence to the faculty building, all complaining that it was a tough climb. The difference was that all my friends adjusted, whereas I always got pains in my left calf and had to stop on the way.
I didn’t think any more of it till winter came and I pulled on my ‘kinky boots’ (remember them? Early 70s high fashion!) and was puzzled to see that the right one came higher up my leg than the left one.
I took them back to the shop and the assistant spotted that it wasn’t the boots that were different sizes, but my legs. And so began my long relationship with lymphoedema, although no-one mentioned the term to me for many, many years.
It wasn’t until two years later in 1972 that a large tumour growing in and around my iliac artery was found to be causing the swelling in my leg. This was a surprise to the surgeon who thought he was looking for an ovarian cyst. After three or four major operations to remove the tumour, which kept growing back, a decision was made to give me radiotherapy.
Over the 50 years I have been involved with medical practitioners dealing with my condition, I have nothing but praise for the majority, except for the radiologist in 1974 who consigned me to a high dose of radiology without any preparation or mention of consequences. I was young and in love, planning a family, and to be brutally told “of course, it will damage your ovaries and you’ll never have children” when I asked about my fertility was harsh. I insisted on a delay and an operation to try and protect one ovary at least, which didn’t work. I am glad that today’s young women can save their fertility.
Let’s talk instead of those who treated me with respect and high levels of professionalism. I am forever grateful to Mr. Dendy-Moore at the Royal Devon and Exeter and especially Mr Pflug at Hammersmith Hospital. I was now living in London, teaching full-time and relatively fit. Unfortunately, I developed secondary lymphoedema, which caused my left leg to swell enormously. I coped, especially as I was a hippie and always wore long skirts. One day at school, lymphatic fluid started seeping through my skin and I developed such a high temperature that I was hallucinating. A friend drove me home and called an ambulance, which took me to my nearest A&E at Hammersmith Hospital. I didn’t know it at the time, but that was my first bout of cellulitis and it kept me hospitalised for a week. Amazingly, it was the best thing that happened to me, as a young doctor, on seeing my leg, said “there’s someone here who can help you with that swelling”, and that is how I made contact with the wonderful Mr. Pflug.
It was now the mid-80s and I had got nowhere asking for help from anyone with my condition, which was so little understood. So when Mr. Pflug said he would have me wearing trousers, it was hard to believe him. He thought I would need four debulking operations, when in fact three was enough, and over the next few years he rebuilt my leg with liposuction. He did a beautiful job and, now that I’m 67, my left leg is in better shape than my right, which is a bit flabby! I follow his advice to the letter – never go without my stocking, avoid standing, raise my leg when sitting and walk and swim as much as possible. When he recommended swimming and I wimpily told him that I couldn’t swim, in his best German accent, he said “Vell, learn!”. It took me a year to learn as I was so scared, but I would do anything he advised.
I managed to teach full-time for 30 years and made a good career, although I had to retire early when the standing got too much. I have some residual problems caused by the radiotherapy in 1974 and chemotherapy (for cancer of the womb) in 2010, but am really pretty fit and definitely enjoy life. I have been lucky to be surrounded by caring family and friends and my supportive partner of 40 years. I begin most days with a half-hour swim, which is the best recommendation I could offer to others with lymphoedema. And, if you can’t swim, “Vell, learn!”
“I begin most days with a half-hour swim, which is the best recommendation I could offer to others with lymphoedema.”
Lymphoedema and me – By LSN member, Karen
In December 2001 I got hit by a car while crossing the road on my way to work. I bounced off the bonnet and onto the ground. My coccyx was fractured and I had bruises all over my body but no lasting damage.
However, a few weeks later I found a lump in my right breast that turned out to be cancerous. It was early stages, least aggressive and so although my consultant wanted me to go through chemotherapy, I decided against this and opted to have only a lumpectomy and radiotherapy.
The day after I had my diagnosis I spent many hours at home on the internet looking up as much as I could about breast cancer. There was no mention of lymphoedema on any of the websites I looked at and, having never heard of the condition before, I had no idea it even existed.
However, I did ask my breast care nurse, both at the time of my diagnosis, and when I was on the phone to her a few days later, what would happen to the lymph fluid when they took all of my lymph nodes out to see if the disease had spread. “It will find another way to circulate through your body” is what I was told. “It shows how clever the body is, doesn’t it” I remember remarking to my husband at the time.
After the lumpectomy, when the lymph nodes had also been removed, a physiotherapist came to see me in my hospital bed and asked me “has anyone talked to you about lymphoedema?”, which of course they hadn’t. She then explained to me what it was, told me what to watch out for and gave me a long list of things that I shouldn’t do, if I were to develop it. These included some things that weren’t a problem to me – no jewellery on that hand/arm, no underwire bras, cut finger nails with clippers not scissors etc. – and other things that were a big part of my life – no gardening (a huge passion of mine), no flying for more than two hours (I’ve always loved long distance travel), no going to the gym (I was a regular gym-goer) and more.
These days I’m sure that list of ‘don’ts’ will have changed but at the time I was devastated at the idea of having to deal with something that sounded so debilitating and that came so soon after having to deal with cancer. I was also angry that no one had mentioned any of this to me before surgery. Reading up on it later, I realised that I could have been given a choice of whether to have some or all of my lymph nodes removed in that arm and that by having only some removed I would have lessened my chances of getting the condition. I’m not saying I would have opted to have the smaller number of lymph nodes removed but I would have liked to make that decision myself.
I’ve been lucky and have only mild lymphoedema. Even so, there was no help or information available to me from the hospital other than the physiotherapist’s one short visit. I lived in North London at the time and found a charity, The Haven, in South London that supported people with breast cancer. I booked an appointment to see them and a volunteer there gave me information about the condition and a compression sleeve, but they didn’t have funding available for a specialist nurse, so practical help on managing the condition was limited.
Over the next few years I learnt how to cope with it. I put together a routine of exercises which I still do regularly and began to learn when I did and didn’t need the compression sleeve. I have antibiotics at home so that I have them on hand if I need them and can take them on holiday with me. I still like to do my long distance travel to places where it could be difficult to get treatment for the condition if needed.
I don’t remember when I found out about the LSN but it was early on in the process. The website provided a lot of useful information and I was able to send for information sheets and videos which were really helpful. I found it comforting just knowing that there was a resource available and that it was something many others had to deal with too. The work the LSN has done over the years in raising awareness of the condition and providing support to those with lymphoedema has been amazing.
As can be seen from the articles other LSN members have written about their experiences, times have changed and much more is known about lymphoedema these days which makes it less scary. Attitudes in hospitals have also changed over the years and I think patients are currently given much more information about their illnesses and the choices that they have.
I live on the south coast now and there is a specialist lymphoedema nurse available when needed. I don’t know if that’s because this area is better equipped to deal with the condition than North London or whether more funding is being made available to train nurses, but certainly lymphoedema is more widely heard of than it used to be.
I think all these improvements in dealing with the condition are in no small measure due to the efforts of the LSN. I hope it can continue working on our behalf for many years to come!
“The work the LSN has done over the years in raising awareness of the condition and providing support to those with lymphoedema has been amazing.”
My trip down memory lane – By LSN member, Peter
What a nostalgic, enjoyable and informative trip through memory lane in LymphLine Winter issue 2014. Trish Phipps in “Lymphoedema and Me” really touched a nerve.
I too developed primary lymphoedema in my early teens – age of 13, I think – so that is 53 years ago. There was no discernible cause but up came the left ankle, and it’s been swollen ever since. Mercifully, except for a brief problem with a wrist, that has been all the problem that it has caused me. That is, if you don’t count 3 bouts of cellulitis, one worryingly in Bali!
After ‘exploratory surgery’ at a Surrey hospital, which today, has a far better reputation than it had in 1962, I was no wiser. After an exploratory ‘op’ with its (comparatively) huge scar, the medics had dismissed ‘inflamed tendon of the tibia’ as the cause, and sent me off to St. Thomas’s. Here my story converges with Trish Phipps.
The amazing Professor Kinmonth, laconic but kind, with his gaggle of junior doctors around him, put a frightened 14 year old at his ease with brusque humour. I was in an adult male ward, 30 patients in two facing-rows, with those incredibly tall and well-spoken nurses, who had to kneel on the marble floors 3 times a day for prayers. Down the centre of the ward was a steaming cacophony of gas-fired autoclaves bubbling away 24/7.
My stay there was 18 years before Trish’s experience and therefore less was known. Prof. Kinmonth arranged for me to have a deep green dye injected, and I spent some 12 hours in a basement corridor – some of my ward neighbours saw me there – spark out and being occasionally x-rayed to test the progress of the dye.
I was kept in for a week, unheard of today, and being away from my home turf, I had only one visit, so the other visitors took pity on me. A great pity I didn’t actually like chocolate!
My dye ‘treatment’ was obviously fairly novel as an unprepared nurse nearly dropped my deep green specimen when she came to collect it. I went back to school… looking only pale green, and apparently the dye was discernible on x-ray months later.
The result? I was told – in lay-terms – that I had a ‘shortage of lymphatic vessels’. That was 1963, and that is all patients could be expected to be told then.
So, no treatment, just pink support stockings which a teenager didn’t wear. And the end of my bed elevated, which a teenager at boarding school soon abandoned. And hefty massage using talcum powder which makes modern approaches look almost brutal, and which was also soon abandoned.
I did get called back for research purposes. A PhD student at St. Barts had me in for a questionnaire, and also held up a case full of glass eyes next to mine to check for matches. She even, to mixed emotions for a 16-year-old, conducted a mole-count! I hope it contributed both to her PhD and to ongoing research!
Later in life I submitted to support hose, now mercifully black in colour. And my visit to the annual LSN Conference a few years ago (remember the Town Crier?) finally convinced me to give up the diuretic my GP had me popping for 25 years to no good effect. Thank you LSN for that.
My local hospice, the wonderful St. Wilfrid’s at Eastbourne, did see me at their lymphoedema clinic for some 5 – 6 years until NHS funding for it being withdrawn coincided with the 2 nurses moving elsewhere. There is no provision (that I am aware of) in my locality (East Sussex coast).
Thank you to LSN and its Team, Headquarters and Advisory, for all you do!