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.
My story of secondary lymphoedema - By LSN member, Mary Zalcman
I had a mastectomy and complete lymph clearance from under the arm in 1995 (when I was 42) following two separate early stage, ductal carcinoma insitu in the same breast, 5 years apart. I remember a mention of possible later swelling in my arm from the surgeon, but apart from that wasn’t given any information about ‘lymphoedema’ and the term was not mentioned. I received good treatment and care in hospital and because I had had quite a radical operation for my small cancer I didn’t have to have any radiotherapy. I took tamoxifen for about 6 months until I had an unrelated hysterectomy when my ovaries were removed.
A couple of years later, while studying and required to do quite a lot of essay typing, I developed some slight swelling and pain in my forearm. The doctor thought it was some kind of repetitive strain injury and gave me some acupuncture. Yes, I now know this is not advised! The pain and swelling remained and after about 6 months he suggested it might be lymphoedema (he had probably by then done some homework!) I was sent to see a lymphoedema nurse at the Wokingham MacMillan Centre who confirmed the diagnosis of stage 1 lymphoedema, she showed me how to do some simple lymph massage and exercises and offered me a compression garment. I was, however, charged for the Class I sleeve as I had had my mastectomy done under private health insurance. Apparently there were ‘more deserving cases’!
Eventually, after about a year and by appealing to the primary health trust, I did get sleeves supplied free. Around that time I fell and broke the wrist and again found little or no knowledge at A&E of the effects on my lymphoedema. I had a difficult time when I had to have my plaster split to relieve the swelling and excruciating pain. After the plaster was removed I managed to access some MLD from a private therapist. This was very much still in its infancy. By doing that regularly for several weeks I managed to bring my arm back to a manageable size.
I transferred to the nurse specialist at The Parapet in Windsor for whom I have the highest praise. She guided me through what was a minefield of advice and garments. Supplying sleeves for normal use and swimming. She was always on the end of a phone for my questions. She told me about the LSN and gave me lots of useful and informative leaflets. Unfortunately she is about to retire and she will be replaced by a nurse only able to measure for garments but not able to do any MLD or bandaging. Bad news for patients in East Berkshire.
This was about 15 years ago and since then things have definitely improved. The choice of garment, the understanding of medical staff and the availability of MLD (although still mostly privately) have all improved. About 2 years ago (I was getting a bit complacent I think!) I developed stage 2 lymphoedema in my wrist and hand after pulling my suitcase for too long. I managed to find a therapist quickly who used some compression bandaging to get it under control. Not a pleasant experience but effective however! She measured me for a custom made sleeve and glove combined, which I have worn ever since.
I am lucky to be able to afford to have regular massages (every 2 weeks – it is my ‘gym’ membership!) and I have been told I manage my lymphoedema very well. I do a simple massage and exercise every evening, apply E45 cream at night, wear a combined sleeve and glove (Class II to elbow and Class I above elbow), usually in black, for about 12 hours a day. I also keep my weight under control, do a regular Pilates class, and do Nordic Pole walking several times a week. Every little helps!
The sleeves last me about 4 months before they become very stiff in the hand and the finger seams split. I do get sore areas between my fingers and am experimenting with spray plaster to try and alleviate this. (Suggestions or alternatives welcome!) I have also been told that if my measurements, only, were taken into account, I would not be classified as having lymphoedema. My affected arm is, at some points, smaller than my non-affected arm, due to continual compression. But it is quite obvious if you see my hands side by side that one is swollen. The back of the hand is most affected (not wrinkly like the other one!) and I now know this is very difficult to shift. I still have stage 2 in my wrist and hand and stage 1 in my arm. Again, under the guidance of my MLD therapist I am experimenting! Once my sleeve comes off in the evening I put on a Class I glove with some textured foam inside to try and reduce the swelling. It seems to be helping.
So, I do feel very lucky that firstly, I have survived for nearly 20 years post cancer, that my lymphoedema is under control and it doesn’t often stop me doing things. I have explained lymphoedema to more people than I care to remember and only once met another ‘sufferer’ who recognised my condition immediately. (Except at LSN events which are brilliant!) Finally, I hope the next 20 years will see further understanding, development and funding of treatment and improvement in the supply and range of garments. We deserve it!
Thank you for reading my story.