Your Stories

My lymphoedema story – By LSN member, Diana Hastie

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 Silverthorne

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.”

Sandra’s story: TourDeSands – By Jerry Watson

My wife Sandra was diagnosed with cervical cancer in 2002 when she was 45.

As part of the diagnosis she had to have the lymph nodes removed from her groin to assess if the cancer had spread there.

Following her surgical treatment and subsequent radiotherapy and chemotherapy, she developed swelling in both legs and around the waist. We were informed that this was just a side effect of the surgery and that it would subside.

My wife Sandra was diagnosed with cervical cancer in 2002 when she was 45.

As part of the diagnosis she had to have the lymph nodes removed from her groin to assess if the cancer had spread there.

Following her surgical treatment and subsequent radiotherapy and chemotherapy, she developed swelling in both legs and around the waist. We were informed that this was just a side effect of the surgery and that it would subside.

She was also advised to remain lying down with her legs elevated. A week or so later while taking our dog for a walk, another dog came bounding up and jumped up at her, scratching her leg. Within a few hours the leg became very red and swollen and she developed a high temperature. Sandra was given intravenous antibiotics and told that she had cellulitis and had developed lymphoedema.

This was the first time we had heard of this condition. I distinctly remember that the news of this diagnosis and explanation of the condition was absolutely devastating for her – far worse than her original diagnosis. The advice given was to recline and leave her legs elevated as much as possible, not the lifestyle for a young active person with two teenage children. We were very surprised how little was known about the condition especially from her medical practitioner. Getting information was difficult and at that time there was no support locally.

Since we were both dentists, we had access to a very large network of patients and it was not long before we found a patient who had the same condition. She put us in touch with Professor Mortimer and the Lymphoedema Support Network. At last we had found people who completely understood the condition and its management, but more importantly, people Sandra could talk to.

It was not long before she discovered that completely contrary to earlier advice the condition could be managed and she embarked on a period of MLD – which she had to travel to London to access.

Being the proactive person Sandra was, she soon developed plans to raise money to train a lymphoedema practitioner locally. Once again the patient base was scrutinised and we identified a patient called Lynne who would be perfect. Sandra used her 50th birthday party to raise money and our son, James, also decided to persuade some school friends to embark on a 1,000 mile bike ride to raise money for her cause. We were then able to fund Lynne’s training.

The advice for self-management was clear, regular exercise (wearing the correct support garments) and weight management were of paramount importance.

Running was not an option, so she started cycling. She bought a bike and started to cycle every day. Literally 100 metres to start with but gradually built up to 10 miles per day and then 25 miles could be completed with ease!

A combination of cycling and careful diet simply transformed her life. Latterly she did not even require any massage at all and she had the condition completely under control. More importantly, the regular exercise and being outside and able to do things with the family returned her to her normal, confident, happy self.

In 2012 she had a metastatic recurrence in her lung which needed to be removed, again through cycling she built her fitness and lung capacity back up. She achieved a lung function test of 85% with just one lung. Once, we were cycling in Spain and she did a climb which was 700 meters over 18kms all up hill – it took a while but she did it – with just one lung!

In November 2015 she was diagnosed with a brain secondary, which was removed. In January 2016 we went to New Zealand and on 2nd February did the ‘Central Otago rail trail’ which was 210 kilometres long.

We returned home in March this year, she had a scan which showed her tumour to have spread into her spinal cord and there was no treatment, Sandra died at home on 17/3/16 just ten days after getting home.

I hope you will understand how cycling was not a lifestyle for her, but literally a life-changer for her.

TourDeSands

I have just set up a charity ‘TourDeSands’ which is to raise money for the Lymphoedema Support Network and our local hospice. The name TourDeSands originates from a number of sources, Sands was Sandra’s nick name, and it was a big family joke that she would organise outings, be it on bikes or on foot, which would involve an ordinance survey map and a rucksack of survival equipment. We would inevitably get lost and the children would say we were on “Sands tours”! Then there was the Tour De France, in her early days with lymphoedema, when she spent hours on the sofa, she would always spend hours watching the live coverage of the Tour. I remember her being so depressed as she felt this was something she could never do – how wrong she was.

So TourDeSands is a hugely personal and relevant name for our charity. The 2017 event is called ‘E 2 E’, which is Easton on the hill (Stamford Lincs) to Elviria (Marbella). Starting 22/4/17 and ending 2/6/17 (hopefully!!)

TourDeSands

I have just set up a charity ‘TourDeSands’ which is to raise money for the Lymphoedema Support Network and our local hospice. The name TourDeSands originates from a number of sources, Sands was Sandra’s nick name, and it was a big family joke that she would organise outings, be it on bikes or on foot, which would involve an ordinance survey map and a rucksack of survival equipment. We would inevitably get lost and the children would say we were on “Sands tours”! Then there was the Tour De France, in her early days with lymphoedema, when she spent hours on the sofa, she would always spend hours watching the live coverage of the Tour. I remember her being so depressed as she felt this was something she could never do – how wrong she was.

So TourDeSands is a hugely personal and relevant name for our charity. The 2017 event is called ‘E 2 E’, which is Easton on the hill (Stamford Lincs) to Elviria (Marbella). Starting 22/4/17 and ending 2/6/17 (hopefully!!)

The total distance will be about 1,600 miles and will take me 6 weeks. I have mapped the ride and was somewhat horrified to find that when you add up all the uphill elevations, the total is almost exactly the same as cycling up Everest THREE times – but at least that means there is downhill as well! We are getting friends to join all through the journey to ride with me and most importantly to relay her bike down.

I anticipate up to 70 or 80 riders to be involved in total. We have people who don’t even have a bike committed to riding some sections, which is incredible.

The wonderful news is that there are, to date, two other TourDeSands events taking place at the same time, a TourDeSands in Australia and a TourDeSands in New Zealand, where they will ride the ‘Central Otago Rail Trail’ – her last ride.

How can you help?

There are lots of ways everyone can help, we are having some shirts made which people can buy and wear during the event, you can tell others about the event which in turn, will help to raise awareness of lymphoedema – raising awareness is one of our key goals.

You could organise concurrent bike rides – which don’t have to be 1,600 miles, the more the merrier.

We aim to run other events in the future; which will have the same ethos of using cycling events, which will be very inclusive, encouraging non cyclists to take up the sport, and which will be fun, going to beautiful places, run at a pace which allows the participants to ‘be in the present’ and appreciate all that is around them whether it be the company or the scenery.

So I hope that in sharing our story, a story that I would have done anything to have had a different ending, you may find hope and a positive message from an inspirational lady.

Please log onto the website www.tourdesands.com

“I hope you will understand how cycling was not a lifestyle for her, but literally a life-changer for her.”

My trip down memory lane – By LSN member, Peter White

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!

No treatment – just pink support stockings which a teenager didn’t wear.’