I was diagnosed with breast cancer in April 2003, aged 41; one month after my father died of cancer, and two days after my son's 4th birthday. I had initial surgery in July 2003, when I underwent a lumpectomy and a sentinel node biopsy. I was so relieved to have been selected to take part in the sentinel node biopsy trial as I had heard of lymphoedema and didn't want it to happen to me. Unfortunately, the one node was positive and I had to undergo a full node clearance. As I stated earlier, my son was four and still a 'little' boy. Having gone through so much - he asked me on the day that I went into hospital if he might be too late to see me (he'd been at nursery when my dad died). I was determined to be as normal a mum as possible for him. This included still picking him up if he was hurt - what mum wouldn't. I was still devastated when my arm began to swell, almost a year to the day after my surgery. There was a very long waiting list for the lymphoedema service, so I wasn't seen until October 2004. As my arm was 12% swollen, I had to have a sleeve. The dreadful colour was as depressing as the diagnosis. I spent several months trying to contact various sleeve manufacturers asking them about availability in different colours to match clothes, only to be dismissed with very curt emails. I've now given up for the time being, although do try again every summer, when the sleeve obviously becomes very noticeable and people ask questions like "What have you done to your arm?" The exercises have become a part of my daily life and were so successful at one point that I was told I needn't wear the sleeve unless I was going to be doing some typing etc. Unfortunately, my arm got bigger again and I've now been told this is it for life. If cancer wasn't bad enough, this is a daily reminder. I try to take good care of my arm. When we went on holiday to Majorca, I thought I'd be clever and wear the sleeve at night as a protection against mosquitoes; I didn't know that they can bite through the material, with the result that I had a lovely case of cellulitis! Thankfully, I got a course of antibiotics easily and have a very sympathetic GP at home who is now happy to prescribe a course of 'just in case' antibiotics when we go abroad.

The sleeve and living with lymphoedema have now become a part of me but I would like to think that if there is anything that I can do to support other people living with this condition or to prevent others developing it, I would be happy to do so.

During the first week of January 1985, I underwent a lumpectomy to my left breast. The tumour proved to be malignant.

After a period of three weeks I had radiotherapy for eight weeks. Two treatments a week, alternating with three treatments a week. I had no after effects of the treatment apart from feeling a little nauseous and tired towards the end the course.

Two and a half years ago, some twenty one years after the radiotherapy, I noticed that my hand had become swollen - quite alarmingly.

As it was during the hot weather in June, I assumed I had been bitten by an insect. After two or three days no improvement had been made, I therefore consulted my GP. She thought I had been bitten and prescribed anti-histamines which I was already taking for hay fever.

After a further two weeks, the hand seemed to be worse some days than others. I consulted another GP in the practice who immediately exclaimed "Oh, you've got lymphoedema" and made an appointment for me to attend the lymphoedema clinic at the local hospital.

I was treated very sympathetically at the clinic and given a compression arm sleeve to wear. I attend the clinic every six months and the measurements of my arm still vary quite a lot.

About 18 months ago I had a course of the Bowen technique, which is a form of very gentle massage. Whether it was coincidence or not I don't know, but the arm measurement dropped quite a lot. I would like to have continued with the massage but it is rather expensive at £30 per session and I was recommended to have three. I do massage the neck and chest part of my body as suggested by the lymphoedema nurse at the clinic I attend but cannot be sure that this has been beneficial.

I was first diagnosed with breast cancer in 2000 and had a lumpectomy and lymph nodes removed. After I was discharged, I had a build up of fluid under the arm which was drained off by one of the breast care nurses at the hospital. I underwent 3 weeks of radiotherapy and was then back under the care of the breast care unit. I recovered well with no more problems with my arm at all.

In 2002 I was diagnosed with cancer in my right breast (unfortunately, by this time, I had tested positive with the BRCA 1 gene). I had lost a sister to ovarian cancer and a younger sister had undergone surgery for breast cancer, so the advice of the Consultant, because of the family history, was to reduce my risk as much as possible of a reoccurrence, by having bi-lateral surgery, which after some consideration, I decided was the safest option. I had radiotherapy and 6 months course of chemotherapy. A Hickman Line was fitted into my chest so that the drugs, blood tests etc. could be carried out. The fact that I had lost lymph nodes on both sides was the factor for that decision. I was doing as well as could be expected until about 3 months into my chemo when I was hospitalised due to a very low blood count and infection. No one on the unit I was on seemed to know much about lymphoedema and were unable to take blood pressure samples through the Hickman Line as they were not qualified to do so. I expressed my concerns about this and blood pressure being taken from my left arm but was told it was important that they do this and I was made to feel I was making a fuss.

The left arm was used because I had lymph nodes removed from that side first. By December I was unable to wear my rings and the hand had become swollen. I was referred to the lymphoedema clinic at the local hospice and it was confirmed that I had secondary lymphoedema of the left hand and arm. I was supplied with a compression sleeve and glove and shown simple lymphatic drainage massage.

To say that I was devastated would be an understatement.

Because my arm had remained fairly stable and I was coping with skin care etc. I was discharged in October 2005 and just needed to contact them for replacement sleeves and gloves. No problems again with the right hand until April 2006 when the hand started to show signs of swelling. The only procedure had been a blood pressure reading at my GP surgery, they do not have a cuff long enough to go around the leg and so I really had no choice. Once again, I was back at the lymphoedema clinic and diagnosed with secondary lymphoedema of the right hand and arm, so now I have the matching pair! I attend the clinic every 4 months and they are most supportive and caring.

I feel both upset and frustrated by my experience as I took so much care of myself after all of my surgery and did all of the things I was advised to do. It has been my experience that at most levels there appears to be a complete lack of knowledge about lymphoedema, its causes and implications, the factors and effects of this condition.

Before surgery, I was handed leaflets explaining about the need for care of the skin, exercises and other tips to avoid this occurring. I feel it's the Health Service that needs the information more than the patients.

I hate the summer time when I wear less clothing and I do know how lucky I am to be dealing with secondary and not primary lymphoedema, but after battling cancer twice, it takes some dealing with. I fully support your campaigns to raise awareness of this condition which can be so debilitating. It needs recognising as a very serious condition and bringing into the public eye

After being diagnosed with cervical cancer in April 1988 I underwent a 'Vertheims' hysterectomy in June of that year.

The specialist explained that due to my age (only 34) my ovaries would be left in place if they were found to be clear, but that the major lymph nodes in my pelvis would have to be removed as the cancer could travel through these to other parts of my body.

After the operation and a three week stay in hospital, I was eventually given the all clear and returned home to recover. My treatment whilst in hospital was excellent, but at no time was lymphoedema mentioned or even the possibility of it occurring.

One day, approximately eighteen months later, I began to feel extremely ill with a severe headache and nausea which lasted for a couple of days. I also noticed a burning rash had appeared around my groin which spread down my left leg. I immediately visited my doctor who was completely baffled and sent me to the local hospital where a skin sample was taken to check for cellulitis, by this time my leg had started to swell considerably and I was becoming increasingly worried about what this may be. I later got the results from the skin sample which came back negative.

Over the next 12 years I had regular check-ups at my local hospital and on each occasion I asked the doctors about my leg. No-one seemed to know what was wrong and one doctor actually told me to think myself lucky I was alive, never mind complaining about my leg!

Only one specialist I saw attempted to do anything about it by offering me physiotherapy and suggested I had a few sessions on the exercise bike in the hospital gym.

Throughout all this I continued to work full time and tried to cope with my swollen leg by wearing trousers when I could find a pair that fitted my swollen leg. I also bought the strongest support tights I could find, thinking these would help, which I wore with skirts.

There were some days when my foot was so swollen I could not get shoes on at all.

After searching the internet on my brother's computer I found out a great deal more about the condition and the details for the LSN, which I immediately joined.

After moving home in 2000 I registered with a new GP and mentioned my lymphoedema to her. She immediately referred me to the Macmillan unit at the local hospital where I have been receiving treatment for the past few years. I was given several sessions of MLD [Manual Lymphatic Drainage] and this, together with a compression stocking has made an astonishing difference to my leg.

I know there is no 'cure' for lymphoedema but knowing that there are people out there who understand the condition helps me to cope. I am still working full time, go on long walks whenever I am able and try to keep my weight down

It has taken me around 14 years to get treatment despite me constantly pestering the doctors on the visits to hospital, none of whom seemed to know what it was, let alone how to treat it.

I now know a great deal more about the condition but most of this I have had to find out for myself.

All I can say, is thank goodness for my new GP!

It's hard to believe that only three years ago, lymphoedema was just a medical term, something I needed to be aware of when anything needed lifting, or at hospital appointments when needles loomed, but it played no significant part in my everyday life. I could wear short skirts, high heels and have bare legs in summer. Sadly those days are gone and now exercise, massage and wearing compression tights are part of my daily routine.

When first diagnosed with cancer I felt, like many others, that life couldn't get much worse - but it did! Learning that I had a chronic condition that couldn't be treated by surgery or drugs and the growing realisation that I was on my own in dealing with it, was devastating. The pathos in the slogan "Lymphoedema - because cancer is not enough" neatly summarised my feelings.

In 2001 I had a bi-lateral mastectomy, with the removal of lymph nodes on each side. The breast care nurses went to considerable trouble to warn me of the risks of developing lymphoedema and gave advice about avoiding trauma to the arms. Fortunately, I did not develop any swelling although it was only later that I understood the life-long nature of the risk.

Two years later, I was diagnosed with endometrial cancer of the womb which necessitated a hysterectomy, the removal of lymph nodes from the abdomen and a course of radiotherapy. The support nurse talked me through what I might expect following radiation. We discussed the effect on my bladder, my bowels and my sex life, but no mention was ever made of lymphoedema. The first indication I had that something was wrong was when, part way through the course of radiotherapy, my abdomen and legs swelled alarmingly and I was in considerable pain. I was admitted to the colorectal ward of a local hospital where a CT scan revealed a large lymph cyst in my abdomen which, when drained contained almost two litres of fluid. Again, no one mentioned the possibility of lymphoedema. After ten days the swelling disappeared and I was able to complete the radiotherapy.

I was keen for my life to return to normal after all this, but as soon as I resumed work, my legs and groin began to swell. Each morning everything was fine, but by midday my left leg was so heavy I felt as though I wanted to 'unhinge' it and carry it over my arm. Fortunately, on my last visit to the hospital, where I was being treated for breast reconstruction, I had picked up a booklet about lymphoedema and I began to read more about the condition. Until this point I had associated it solely with the arms and had not heard of it affecting other parts of the body. In view of what I have learned since, that now seems incredibly naïve.

My worst fears were confirmed when I saw the oncologist who said it 'probably' was lymphoedema, but it would 'settle down' in a few weeks. Meanwhile, I should buy Marks & Spencer support tights (which I had already done) and sit with my feet up as much as possible (not very practical for a busy schoolteacher!) I had read about MLD but was told that it was only available privately and because the swelling was in my legs rather than my arms, the NHS could offer me nothing more.

Each day the swelling in my legs and groin worsened and became more painful. I felt depressed and utterly helpless. Having had my breasts, womb and ovaries removed, my legs seemed to be the last vestige of femininity that remained and they were becoming increasingly ugly. Simple things which I had always taken for granted now became an issue. I could no longer wear heels; brisk walking or running were impossible; and sitting for any length of time - at the computer, in the car, at the theatre or in a restaurant - caused increased swelling. Unlike my earlier experiences with cancer, when I had always had support via a telephone line and could discuss my worries with a qualified practitioner, I was now on my own.

In desperation, I rang a local lymphoedema clinic, which offers an excellent range of support treatments to cancer patients, including teaching massage techniques to breast cancer patients, but as the lymphoedema was not in my arms they were not able to see me. My next thought was to contact an MLD therapist. The list I obtained from the Internet showed several in my area and I spoke to some of them by telephone. They were all sympathetic and outlined the different treatments on offer, but I was in a dilemma over which to choose and ended up feeling confused.

Luckily, I found details of the LSN in the back of the handbook published by my hospital and rang the helpline - not very hopeful, I must admit - to see if they could offer any advice. I spoke to a very sympathetic lady, who explained how she managed her own condition and told me of a clinic only 15 miles from my home, which may be able to help. Her re-assurance and positive approach gave me hope that something could be done.

Although the clinic dealt with breast cancer patients, the two wonderful nurses who run it offered to help and were interested in transferring their expertise in treating arms, to other parts of the body. They offered practical advice, explained some simple massage techniques and gave me a contact number to use if I became worried. I felt like hugging them! I went three times to the clinic and their support made such a difference.

Some time later, during a follow up appointment at my hospital, I mentioned my concerns about lymphoedema to my consultant. He told me about the work of Professor Mortimer and referred me to the clinic at the Marsden. Shortly after this, I met two of their lymphoedema specialist practitioners and oh, the relief in talking to people who knew what to do about my swollen legs! They used computer imaging to assess the extent of my lymphoedema; explained the importance of exercise and daily care; supplied me with compression tights; and later offered me a course of MLD. I now attend twice yearly for regular monitoring.

The swelling and pain have reduced considerably and my lymphoedema is now manageable. I've installed a tread mill at home so that I can walk each day whatever the weather, taken up Pilates and even, on a few occasions, I've been able to wear high heels. Although I have had to make adjustments to my life and need to take care with certain activities, lymphoedema has not stopped me doing the things I've wanted to do over the past 2 years - life is good again!

I am fortunate to attend such an excellent clinic and the 80 mile round trip is certainly worthwhile, but it would have saved me a great deal of anguish if information and support had been made available by my local PCT, which serves a population of 360,000. There must be many others in the area needing help with lymphoedema in the legs or abdomen and feeling as desperate and isolated as I did. In all other respects the cancer care I've received over the past five years has been superb. The priority was obviously to treat my two cancers, but it became increasingly clear to me that many doctors and consultants have little or no understanding of lymphoedema and the impact it has on the quality of life. Only when medical training gives lymphoedema the status it deserves can we hope for improved services.

In December 1998 I had to have a full hysterectomy due to advanced cancerous cells of the womb, also some lymph glands were removed.

I was fine until a year and a half later when my feet started to swell up and become misshapen. It was during the summer so we put it down to being warm and standing up in my shop.

I went to see my GP who tested my heart etc. and then gave me a support knee sock which, after maybe two weeks, did no good at all. Plus, now my leg had started to swell and became all lumps and bumps and very achy.

I then went back to see a consultant at the hospital who thought it might be a leg infection so I was given a course of antibiotics. Two weeks later, it was no better but much more painful and swollen. The hospital then sent me for a scan and tests thinking it might be a DVT, but nothing there. Just before Christmas 2000, I was told it was lymphoedema, which I had never heard of. As it happens, a lymphoedema nurse had just been assigned to my hospital, so I was virtually her first patient.

She was marvellous and gave me some hope that eventually somebody could do something for me. She measured my leg and showed me how to massage it and ordered some support stockings.

Slowly but surely my leg started to get some shape back and the swelling went down quite a lot. My leg is massaged every single night with Diprobase cream by my husband and I wear the stockings every day. It still aches but is much more manageable now.

It is a forever job but well worth it and I'm supplied with stockings twice a year, for which I am very grateful. I recently had breast cancer and lymph glands were also removed so I'm now massaging my arm in a preventative measure, hoping no swelling will occur.

There must be many, many people suffering from lymphoedema and no help available for them as yet; it is a very sad situation. I count myself lucky for having my treatment.

When I noticed a mole above my knee on the inside of my leg, as I had private medical insurance, my GP referred me to a skin specialist who has been brilliant all the way through. He subsequently removed the mole at a private outpatient clinic. When I received the results of this surgery, they showed cancer. I was referred to a plastic surgeon and put on the NHS list as he was unable to fit me in on his private list. A wider incision of the mole site was taken and also the lead lymph node in my groin area. The results of this showed traces of cancerous cells. Two weeks later, I had all the lymph nodes removed in my left groin via a groin dissection. On the morning of my surgery to remove all the lymph nodes, I was told by the registrar "you will probably have to wear a support on your leg the rest of your life as a result of swelling".

I went backwards and forwards weekly after surgery to the NHS clinic where they were draining the groin area. I was going on holiday six weeks later and just before my holiday a senior nurse at the plastic surgeon's clinic measured me for a made-to-measure support. I did not receive this for nearly three weeks.

I did not have to have any chemotherapy or radiotherapy and I was not seen by an oncologist. I am now seen every three months by the skin specialist at a private clinic.

I tried to wear the support, but to be honest, it was horrendous. It was uncomfortable, it slipped down when I was walking, went into a crease at the back of my knee and at the ankle, and I was forever pulling at it and tugging at it. I tried to contact the plastic surgeon's senior nurse about my problems but could not contact her and found the clinic totally impersonal and useless. As the weather got hotter and the support became even more unbearable, I got to the stage of stopping wearing it altogether.

I hunted on the internet to try to find a source to buy my own support stocking. I bought a pair of lycra shorts from a website that I found - which were comfortable - cost in excess of £50 - but did not stop the swelling. By this time, I had found information from the LSN website and a contact nearby, who kindly gave me the names of suppliers of support stockings locally and she also enquired if I had been referred to a lymphoedema clinic - I hadn't and didn't know this even existed.

I went back to my GP (whom I had never consulted prior to this) and asked to be referred to a clinic. I was seen by a Physiotherapist at the lymphoedema service and within minutes of meeting her, she was showing me various types of support stockings that she could source and gave me information about the LSN and their fact sheets. She measured me again and within one week I had a new support to wear which is brilliant, I can wear it all day, seven days a week. I was given information about wet shaving my legs, cuts and grazes when gardening, the effects of the sun, care of the skin - all new to me and something I had never considered before. I received two garments on the NHS and I am due to go away on a long holiday next year; when I enquired if I could buy a third garment myself, I was quoted £54 for one stocking! I joined the LSN and purchased the video about self massage techniques, which was much easier to follow than what the Physiotherapist had showed me.

I don't know if the lack of information given to me was due to being under the plastic surgery unit, not having a cancer nurse, or not having to see an oncologist. Nor was I ever referred to a lymphoedema service. Given the increase in Melanomas that is constantly reported in the press, I cannot be alone in receiving no backup - no advice - no literature - and having to source everything for myself.

I feel that the whole attitude was "you are cancer free, get on with life". I am not the sort of person to get depressed and so I never sat and felt sorry for myself and did not give up by thinking "this is it for the rest of my days". I am in my late forties and thank my lucky stars that I have been given the all clear. I am fit and healthy now and I don't let my lymphoedema stop me from what I am doing. But it would have been so easy to give up if I was that way inclined.

I only hope that the LSN can find a way to ensure that all patients receive the valuable information that it can source for them. I cannot see that it would be impossible, surely just for the hospital to give that first form of contact to the LSN to ensure that anyone affected in this way is given support and information. I feel that the lack of information provided was a major oversight at the time of my surgery and immediately after. If I had had more information - or simply a card giving contact details of the LSN - I would not have struggled for so long.

When I was 19 years old and in my second year of University I remember standing in the living room saying to my housemates, "Do my legs look swollen to you?" They agreed they did look a little swollen but we didn't know why so left it there! A few months later I moved to Reading to carry out my placement year for my third year of University. This meant for the first time I had a 'proper' office job! I very much enjoyed my job and was learning lots of new exciting things. However, there was something which appeared to be bothering me during the day at work and that was my legs! I asked the women in my office for their advice as to why they thought I was getting swollen legs and they said it could be due to sitting down all day or water retention.

As a perk of the job the company hired a reflexologist to come in for the day so we could all have some treatment. As I had never had this before I signed up for a session. The lady worked her magic on my feet and at the end asked if I had trouble with the circulation in my legs. I said "no, not that I was aware of" as I didn't put two and two together about suffering from swollen legs. The lady said that I should keep an eye on it as she had struggled to get my feet to warm up and could feel something wasn't quite right. I just thought, "Oh yeah, I bet this reflexology lark is all a myth!" I couldn't have been more wrong!!

So, for the rest of my placement year I struggled with my legs at work. They were fine when I woke up but as the day went on and I sat at my desk they became heavier, more swollen and painful. By the time I got home my legs were really hard. In the evening I used to sit on the floor and elevate my legs on the sofa as this felt like it relieved the pressure for me and it was as if I could feel all the fluid flow back down my leg to where it was supposed to be!

When I returned home for a visit, my mum and I agreed this wasn't normal, so off to the doctors we went. I was fortunate in the fact that my GP diagnosed my condition, in a very matter of fact way: I had lymphoedema. Surprisingly they didn't offer me any support or treatment. And when we asked why I had this condition and what could be done, we were told that I was either born with it, had a tumour or had an infection which caused it. She said there was no cure for the condition and that was that! So when we got home, very confused and upset, we started researching on the Internet - all that stuck in my head was the reference to the tumour... did that mean I had one?! So we decided to get a second opinion from another GP. The second GP was very sympathetic and agreed with what the first GP had diagnosed but couldn't refer me anywhere as I wasn't her patient. So I wrote a letter to the first GP explaining my concern over the tumour and how I didn't know what to do. We went back to see her and I wanted to know if there were any tests I could have and how was I supposed to live with this condition - the images we had found on the Internet were worst case scenario and did that mean that was what my future held? She said she would refer me to our local lymphoedema clinic, but didn't see the point in having any tests as she was convinced what my condition was. However, the waiting list for my local clinic was 9 months so how could I wait that long with all these questions and worries in my head? My parents paid for a private appointment and I saw a lymphoedema consultant. He allowed me to have the tests as an NHS patient and I was put on the waiting list.

In the mean time, my friend's boyfriend was studying to be a doctor at university and he had just written a report about lymphoedema, so she gave it to me so I could learn more about the condition!

After I had all the necessary tests to diagnose the condition I went to see the consultant for the results. He said all the results came back normal which confused me even more. He said that sometimes if they came back normal then that also meant you had lymphoedema... that just didn't make any sense to me! Then he had the cheek to say "Well I don't know what else to say, your tests are normal and sometimes people just have chubby ankles!!" I was shocked that the one man who I thought was on my side and knew what my condition was dismissed me in one sentence and made me feel like a fake!

Luckily for me my appointment with the lymphoedema clinic came up and I went for my first appointment. What a saviour!! The nurses there were very supportive, sympathetic and took the time to explain things to me. I was fitted with my first set of stockings. They were knee length stockings and an horrendous beige colour! I started wearing them and they were itchy as hell! My knees started to swell so I was then fitted with full length stockings, these were even itchier! Not to mention made me feel unattractive and totally different to everyone else. I had returned back to my 4th year at university by this time and it was a very stressful time with lots of work as well as coming to terms with my condition.

I was now 21 years old and had to wear these horrendous stockings for the rest of my life! I felt so alone, as no-one knew how I felt and when I tried to talk about it, it sounded like I was being vain. I would never be able to wear skirts again, I felt frumpy and unattractive, which boy would ever want to go out with me? What happens if the condition gets worse? Would I be able to have children? Although people tried to understand, I did hear a few times 'Well it could be worse, at least you don't have cancer.' Which is true and of course I was grateful for that, but being a young female, body image seemed to outweigh how worse off others were... this was my life and my problem seemed the biggest thing to me.

I kept up my appointments at the clinic and the nurses were still great but there never seemed to be any time to talk about how this was affecting me emotionally. I went to our local support network group but I was disheartened by this as all the members were a lot older than me, so this made me feel even more alone, like I was the only young person in the world who had the condition!

I rebelled against wearing my stockings and only wore them for work, taking them off as soon as I got home and not wearing them at weekends! I was only hurting myself and causing myself pain but I just wanted to be like everyone else my age.

The years went by and I started to come to terms with it a bit more. Then out of the blue I met my boyfriend! We went on a few dates and I didn't wear my stockings as these made me feel unattractive but then I thought, if this is going to work, I need to tell him. So I plucked up the courage and told him about my condition and that I needed to wear stockings everyday. He looked at me and said "So what, it doesn't bother me. I like you for who you are and that is all of you." I couldn't believe what I was hearing! Well if he wasn't bothered then why was I?! He made me realise that it was just a part of who I am and should just accept it instead of fighting it. He also told me I had to wear my stockings all the time as he didn't want me to be in pain, especially if I wasn't wearing them just around him. So I started to wear my stockings all the time like I was meant to and my goodness what a relief! My legs didn't hurt as much and felt really supported!

I then started getting complementary therapy from my clinic and this was such a blessing, not only did it help with my condition but the therapist listened to all my thoughts and emotions, so I was able to get all my concerns off my chest without being judged or being told "It could be worse." I then also paid for reflexology and again the therapist was amazing and she helped balance out all of my body.

I have now been with my boyfriend for 2 and a half years and we have been living together for 18 months. He has a daughter who when I first met her asked a lot of questions about my stockings and why I had to wear them. She even commented on how she had never seen me in a skirt! But now she too just accepts that I have the condition and putting my stockings on in the morning is just part of my daily routine and it is just part of who I am.

I decided to write to the Lymphoedema Support Network's newsletter, LymphLine, because in last month's edition there was a letter from a 26 year old who also had primary lymphoedema and wanted to speak to someone her own age. This took me back to how alone I used to feel and wished there was someone my age I could talk to. Well this inspired me to set up a group on the social networking site Facebook to try and bring together all young people who suffer from the condition to talk about their experiences, concerns or just to meet people in a similar situation as them. Patients of any age are welcome to join if they want to. All you need to do is register at www.facebook.com and set yourself up a profile, then search for my group which is called 'Lymphoedema is part of who I am.' I hope this will encourage people to join so we can unite and all say loud and proud 'Lymphoedema is part of who I am.' It's taken me a few years, but now at the age of 26 and thanks to my family, boyfriend and lymphoedema clinic, I have learnt to live with my condition instead of fighting against it!

I am a woman of 79 years. I have one daughter, one granddaughter and one dear little great grandson. I live in sheltered accommodation as I find walking very difficult now.

I was born in East Yorkshire; as a girl I can remember my mother suffering, she was a tiny little woman and very slim except both her knees were very swollen. I'd come home from school to find her standing on one leg to do the veg for dinner. When I asked her why, she said "they both hurt so I use them one at a time."

As a teenager I noticed that my ankles were always puffy, when I asked the doctor why, he said "it's only a drop of water you carry". The ankles never changed, but years after I realised my legs were misshapen.

In my 40's we went to Australia and my legs got very painful in the heat and I was advised to have my varicose veins stripped; after all this, I had one leg skinnier than the other. As time went by, my legs became misshapen more than ever; the doctors didn't know what it was. I felt so conscious all the time. I was 49 years old when I had a hysterectomy and the legs just spread out more. I suffered badly with Ortho Arthritis and had both knees replaced. One of the operating team, after the operation said "you have a lot of fat on your legs, you should slim them". I asked "how do I do that?" …no answer.

My knees now were very swollen; one of the doctors said "its lymphoedema". "Is there any treatment?" I asked. "I don't really know" was his reply. I found the name of the Lymphoedema Support Network in a magazine and wrote to them for some advice. I have been an LSN member for quite some years now. My own doctor didn't want to know or try to help me.

I recently had to have another operation to replace the left knee replacement, the surgeon worried about my leg swelling but decided to operate any way. As the lymphoedema made my leg look crooked, he put a large pin in my leg to straighten it. The leg looks straight but I now have swelling round my knee and also on the thigh on the outside of my leg. Now my legs are quite grotesque and walking is difficult.

My daughter's legs have thickened and her ankles are very swollen. My granddaughter's ankles swelled when she was carrying her baby but are back to normal now.

I know that there is nothing that can help me now but I would dearly love to hear that there is hope for my family's legs. When I look at my great grandson's lovely bay limbs, I pray that he will not suffer like this.

There is little or no help for people who get lymphoedema other than through cancer. Thirty years ago I got lymphoedema after a fall on my left leg. Over the years, I was told I would have to live with it.

Three years ago I managed to see a consultant and was referred to an NHS clinic but didn't hear anything. I went private for lymph drainage massage. Six months ago I had to give up as I couldn't afford it anymore. I feel the £2,000 I spent was a waste of money. Now I'm having trouble finding a nurse on the NHS who can measure me for my stockings. The ones I've got at the moment don't fit very well.

There needs to be more done for people like myself on the NHS… where on earth do we go!

I was born in August, 1931. I am assured and know for a fact that both my legs were exactly the same size until I was around 10 - 11 years. My Mother then noticed swelling in my right leg. I had at some stage fallen from a bicycle and had a very bad cut knee, but do not know whether this was connected. My Mother took me to our Doctor. It was, of course, Wartime and there were far more urgent cases to be dealt with.

However, I was referred to a South London hospital and spent some time in there. No conclusion was reached and I was then sent to a different hospital. under a heart specialist. After a period there, during which the blitz was in progress, and, having numerous tests including one in which my leg was immersed in water for some considerable time, I was discharged and no treatment was recommended and no conclusion reached.

I had my first dose of erysipelas (cellulitis) at the age of about 12. I was very ill for about 3 weeks and was on M.&.B. My bedroom was fumigated by the Council after the attack.

After this, I was prescribed elastic bandages which I managed to do myself. Fortunately, by this time, penicillin was invented and any further attacks of cellulitis were dealt with by this. I also had many types of elastic stockings - none of which were strong enough.

I married and my husband's work involved us moving frequently and having to attend different surgeries. It was always a struggle to get doctors to give me antibiotics and none of them seemed to be very conversant with lymphoedema.

At 35 I had a gall bladder operation. After the operation, the Surgeon asked me if I would like to have an investigation whilst there on my leg to ascertain the problem. Dye was inserted in my foot and I had to lie still for sometime. The conclusion was that the lymph glands in my right leg did not function. The same surgeon told me about the procedure called Thomson Flap operation.

After 3 pregnancies, and at the age of 49, and after many attacks of cellulitis, I decided to go for the above operation. The procedure consisted of cutting the leg each side from the ankle to above the knee and making a flap of the skin so that the fluid ran back up the leg. I was in hospital for 5 weeks as the first side operated on did not heal and I had to have 3 skin grafts. It was decided not to operate on the other side of the leg. My leg improved in size but soon began to increase with activity.

Much later, my Sister saw an article in a magazine about treatment given at a London hospital and I asked my Doctor for a referral. I had very strong bandaging over a period of 2 weeks and my leg reduced considerably. I was also provided with 2 stockings, Sigvaris 505 and Mediven plus 208 (worn on top). I have continued using these stockings and my leg remains much smaller and I have less attacks of cellulitis.

I am now 75 and have always had a very active life. I still have to be very careful to avoid infections and I always keep antibiotics with me.

My left leg and foot are my main problem, but over the years, the swelling has spread to the right leg and foot and sometimes other parts of my body, but only slightly. After years of being told nothing else could be done to help and that I had to take pain killers, I saw a relief doctor. I was crying with the pain and he sent me to see a specialist. He couldn't believe that I hadn't been seen by anyone for 47 years (I had been told I had Milroy's Disease when I was 13 and given diuretics which I had taken on and off for years). He sent me for a lymph scan but that didn't show up any blockages. They couldn't tell me exactly what was causing the condition but organised support stockings. These have made such a difference to my life. It took time for the stockings to work and at first the pain was unbearable putting them on, but it's not so bad now and it's well worth it. At least now I get a little respite from the severe pain a lot of the time and most of the time when I do get pain, it's bearable.

In July 1992, when I was aged 69, I woke up in the night with a great pain down my left leg, which was relieved when I got up and walked around. As time went on I noticed my knee was swollen and later in the month my ankle swelled. My doctor said that I had damaged a drainage vessel. (How right she proved to be). However, at the time, little was known about Lymphoedema and all she could recommend was support stockings.

As the year went on I visited another Doctor; (the first one having left the practice), because the leg was getting more swollen, he carried out a rectal examination to check if there was a spinal tumour; most unpleasant. He sent me to a specialist who also insisted on giving me a rectal examination! He then arranged an ultrasound scan, which showed nothing and then said "I think you have had a DVT. Get a support stocking ready for when you have the next". I walked out in disgust

In March 1993 I went privately to another specialist who said "I do not think you have had a DVT" and sent me for a lymphoscintigraphy which diagnosed what my first Doctor had said - a blocked lymph gland in the groin.

In April 1993 he booked me in for a week of complete bed rest with raised leg, after which time the swelling on the leg was reduced by so much that you could see the bone on the shin. Physiotherapy then followed, twice a week, during April, May and June after which time the Physio and I decided that it was doing no good. I therefore, had to rely on stockings for control.

I then heard from a friend about a hospital treating lymphoedema patients and asked to be referred there and this was arranged. I was admitted for a scan and was then put on to a Flowtron pump and it was decided my leg had responded. For the next 2 years I attended the swollen leg clinic at the hospital every six months, where they supplied me with stronger support stockings. In 1996 I attended the Vascular Clinic, but after 2 years of visits, which entailed travelling down from the Wirral and staying overnight, only to be given minutes when they said "You are doing OK, carry on." I decided it was not worth it.

I then asked if I could be referred to the local hospital oncology section which was pioneering a Lymphatic Clinic and that was when things improved. Under their treatment my leg reduced considerably and I attended there every six months for four layer bandaging. In the beginning, Flowtron pumps were used but these were gradually replaced by MLD (Manual Lymphatic Drainage).

I was lucky to be included in the treatment, being a primary case. Others were not so lucky. They had two treatments and that was it. I was allowed to keep having treatment until October 1996 when the Oncology Section passed primary cases over to a new pioneering service, funded by my first correct diagnostician, who is fighting hard to get the service funded by the PCT for primary patients. They are 'coming out of the woodwork now', never having had any treatment on the Wirral, some since birth. The Oncology Section has been wonderful for post cancer patients.

I am lucky, in that it is only one leg affected, and that of late onset and probably due to damage. I can play the occasional golf and get about normally. I do need shoes of two different sizes and do suffer from some discomfort, but that is a small price to pay as I am now aged 83.

I broke the ankle of my normal leg, playing golf 3 months ago and my Lymphatic leg supported me throughout the months of Zimmer and Crutches and is still going strong. Thank goodness it was not the Lymphatic leg as that would have caused complications and no surgeon would have dared to operate.

I go for 4 layer bandaging next week and hope the broken ankle leg will repay the complement!