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. 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.
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
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!
Lymphoedema and me - By LSN Trustee, Brenda Thomas
My diagnosis of lymphoedema in the left arm came 12 months after breast surgery, axilla clearance, chemotherapy and radiotherapy. I remember being stationary in a traffic jam and looking at my hand on the steering wheel and wondering why my watch was suddenly tight to the point of uncomfortable when I usually wore it ‘bracelet’ style. I was lucky, my GP knew what is was and referred me to the John Radcliffe Hospital in Oxford where there is a lymphoedema unit attached to the breast cancer unit.
I was duly seen, assessed and measured and subsequently supplied with 2 compression sleeves renewable every 6 months. I was given the standard advice and it was then that I first became a member of LSN. This was in 2002 when I was 52 years old and working full-time.
Cellulitis quickly followed, although I had no idea what it was when it first appeared. I awoke one morning feeling a bit ‘off- colour’ but went to work as usual. When I removed my jacket at work, I was surprised to see how rapidly the small pink blotches had developed into angry red blisters and I asked my colleagues why they thought I had ‘shingles’ in one arm only. They came to investigate and all agreed it wasn’t shingles but they didn’t know what it was, therefore, I should return home and make an appointment to see my GP. By this time I was feeling decidedly ropey. Don’t forget, in 2002 it was still possible to arrange a GP’s appointment for the same day.
So, I was prescribed antibiotics which did the trick. This situation continued for several years – I had about 3 episodes of cellulitis each year which actually got progressively more severe each time and it seemed to me that my arm rarely shrank back to its pre-cellulitis state after each episode. The difference between my affected and non-affected arms was 9% and is now 20%. Therefore, in 2013 my new GP, the original having now retired, suggested a prophylactic course of low-dose antibiotics which I reluctantly agreed to at the time but now feel it was a good idea as I experience no discernible side-effects and between 2013 and now I have had only one further episode.
In 2004 I joined a gym and attended classes for cardiovascular, strength and balance; I still go to these classes and have no trouble using resistance bands for building and maintaining muscle in my arms. I am also able to perform press-ups and planks along with everyone else in the class. I’m always aware of my ‘dickie’ arm but I am not precious with it as I find the strength and tone in my limbs beneficial. The gym also has a lovely pool which I use frequently doing about 40 lengths in a 20 metre pool at one session; I take my time, I don’t race. Dare I admit it but I also use the steam room and sauna from time to time, never staying in either for more than a few minutes at a time. It works for me.
In 2007 I found a lovely MLDUK practitioner who visited me at home and helped me enormously until 2013 when she became very ill and was unable to continue with her MLD work, I subsequently found another practitioner but I am not as pleased with the results these days – although it is hard to say why.
I’ve been given much advice along the way, wear your sleeve, wear gloves for gardening, avoid sunburn like the bubonic plague and I usually do all of this. I have on many occasions been careless with a vegetable knife, bruised my affected arm quite severely and always expect an episode of cellulitis to follow, it rarely does; it seems to ‘come at me out of the blue’ for no real reason.
My affected arm and I have travelled on 12-hour flights to various destinations, been to Yellowstone National Park in Wyoming, USA in the depth of winter when the temperature was -26 degrees and the altitude is 8,000 feet above sea level, all with no problems whatsoever for my arm. Incidentally, we visited the park to observe the wolves which we did each dawn with spotter-scopes. We also saw bison, beautiful huge creatures who are able to stand stock still for hours at a time, not blinking or twitching a tail or a muscle in an effort to conserve every last calorie – they won’t survive the long cold winter otherwise. Truly fascinating. My arm and I have also been on safari in South Africa, I booked a trip that did not require me to have anti-malaria drugs. Again I had no trouble and I can honestly say I don’t give my lymphoedema a second thought most of the time.
In 2010, when I was 60, I retired from full-time work and my husband and I took our 40 year old, bright orange, bay-window VW camper van on a trip to ‘follow the sun’ for a season. Storage space is tight in a van and I remember that my husband and I had room for a very small wardrobe. We both managed on 2 pairs of shorts, 3 tee-shirts and a fleece for 3 months. It’s amazingly liberating actually. Anyway, some time in the August we were in Avignon and I developed cellulitis, no problem I thought as I had been prescribed a course of antibiotics to take with me on my journey and ‘self-diagnose’ if needed. After a few days the cellulitis was not getting any better and my temperature was still too high. Of course, I had left it until midnight on Saturday night before I realised I had to do something about it (why didn’t I deal with the obvious situation on Friday afternoon when I could have visited a surgery?) I had to enlist the help of the campsite manager and summons a doctor to my van-side. The doctor duly arrived, took one look and told me to bend over as she was going to give me a high-dose antibiotic injection in my gluteus maximus (only she didn’t call it that!) She said it would hurt. It did! But I recovered quickly and carried on with the trip.
Since 2013 lymphoedema provision at the John Radcliffe hospital has deteriorated with many patients being discharged. I received a letter stating that, as my nurse had retired and no-one else had been recruited, my appointment for assessment and measuring was cancelled. After hearing nothing for a year, I contacted the hospital and after many telephone calls and a letter of complaint, I was given an appointment in August 2016. By this time I had been without a compression sleeve that fitted for one year and 10 months. I have now been seen and things are looking up but the experience has made me even more determined to support others with the condition. I have recently been selected to the LSN Board of Trustees and look forward to serving our membership.