AnneBury8 years ago

I think a good start would be to contact the Lymphoedema Support Network lymphoedema.org. They also gave a telephone advice line, details on their website. Also look up lymphoedema on the NHS Choices website. Both those will give balanced information. Everyone's lymphoedema affects them differently. Mine is a nuisance (below knee, both legs feet and since childhood - I have a brother and sister with it as well). We all lead very full lives and all get excellent NHS treatment (although that wasn't always the case). The main thing to remember is that everyone is different and some do have more difficulties than others. Most "lymphies" I know manage things really well.

Catlady56 in reply to AnneBury8 years ago

Thank you for that AnneBury, I will look into your recommendations.

Reply (0)Report

Suzymay8 years ago

Hi Catlady.

I had my first appointment at the lymphoedema clinic yesterday . I had been referred by my physiotherapist a few weeks ago.

There were about 13/14 patients there. The session began with a us being greeted by volunteers from Tenovus and Cancer Care with a cup of coffee or tea. We were able to chat with other sufferers until a certain time was allowed for those booked in for this session had arrived.

A brief introduction by a Cancer Care rep and Tenovus rep then began our session.They made us aware of groups and activities available in our area.

A lymphoedema practioner/nurse then explained and showed us a slide show about how our lymph system works. She then made us aware of how it is affected by cancer treatments etc. the importance of protecting the affected limb/s from cuts,scratches, bites etc.plus why we should continue to exercise and the affect it has in moving the trapped lymph fluid in the limb/s.

Once the short but necessary information session was complete we were seen individually by a specialist nurse. I then told her about the difficulties ,pain etc I was experiencing;medication I was using and my Cancer history and treatment. My limb was then inspected ,assessed and measured.

Appropriate treatment was recommended and explained in detail ( manual massage, self managed massage and Light treatment tailored to my assessment) and follow up appointments arranged. If compression garments were deemed necessary then these would be ordered and time scale for their delivery given.

This was all completed in a warm caring and friendly manner by all those involved with our clinic.

I left the clinic feeling reassured and happy in the knowledge that I had been assessed correctly and everything possible was going to be done to help elevate my pain and discomfort.

I would recommend that you take along relevant details for your doctor/s surgeon name and address plus telephone number. Dates of all the treatment you have undergone especially if being treated for cancer. This helps them to assess whether or not you are still being affected by radiotherapy,chemo or surgery and the type of drugs used etc. I took my appointment cards.

I hope this post helps to alleviate any anxiety you have. I can honestly say all the treatment I have received so far has been amazing. I can not thank all those who have treated me at,each stage of my cancer treatment enough.

We are so lucky to live in a country where treatment is available and we do not have to worry about finding the money to pay for most of our care.

Catlady56 in reply to Suzymay8 years ago

Thank you for reply Suzymay. I don't have cancer and haven't had any surgery for anything, and am not on any medications. The swollen legs and feet have just come on slowly over the years and have worsened since menopause (I'm 59). So far I've just "put up with it" but skin condition is becoming very poor, and having had one tiny ulcer 12 years ago following a fall off my bicycle, I'm anxious to avoid another, and yes the discomfort and current limitations to my mobility is a little tedious. I used to walk for miles and cycle too - but that was 15 years ago. You are quite correct, we are extremely lucky to have NHS and I am most grateful that. I am reassured by your positive experience and I hope your progress continues well

Reply (0)Report

morganite8 years ago

Clinics vary but they should do a full assessment of your condition, needs etc, and advise and organise relevant treatment, don't frighten yourself thers a lot of support on here, Keep positive

Catlady568 years ago

Thank you morganite. The internet is both a blessing and a curse! I shouldn't scare myself before I know exactly what is what really. Yes, I will be positive. Whatever treatment I am given has got to be an improvement of what I have put up with for too many years before seeking help. Thank you for your advice

galtyboi8 years ago

Relax,dont worry .If you got lymphedema your nurse will explain to you about keeping your legs in condition ,moisturizing etc then discuss compression bandaging,lots of people are different ,im am speaking of my experience at first appointment at nurses clinic.My nurse measured me up for farrow wraps which are away easier ,they are velcro straps that are all on stem bandage and you fit around the swollen limbs and tie the velcro easy as that.When the swelling is under control with the farrow wraps you nurse may measure you up for compression stockings which you pull on instead of velcro straps.With lymphedema I have been on compression stockings now and have got quite used to putting them on and taking them off ,so there you have the basics many people have their own story to tell,so im talking about my experience.There you have it good luck to ya ,hope all goes well.Dont worry .

Catlady568 years ago

Thank you for your helpful information and encouragement

Butterfly-lady8 years ago

Hi there

I also have Lymphoedema in both legs which is not cancer treatment related. Mine was a side-effect of a prescribed drug and unfortunately when I pointed out the swelling on my ankles to the consultant who prescribed the drug she stated that it was not a side-effect, so I carried on taking it for eleven months. My GP then intervened as the swelling had gone above the knees, but the consultant ignored the request to review so I then went private 7 days later and had it confirmed that it was a well known side-effect of the drug.

I eventually was seen at a Lymphoedema clinic but could not be treated there apart from being measured for compression stockings as they had to prioritise patients with it affecting the face, neck and torso. I have paid privately for Lymphatic massage which is really helpful but costs a lot and am now waiting to see an NHS consultant next month. I have campaigned for the last year for treatment to be made available where I live for people with non-cancer treatment related Lymphoedema in addition to the existing service for cancer patients and after nearly a year have succeeded in getting the CCG to commission a service, the process of which is happening now, so hopefully the service will be up and running later this year.

The Complex Decongestive Therapy treatment is really effective and the before and after photos I have seen are amazing. I also have the shiny skin and flakes on shins and the answer is to use lots of and lots of moisturing cream which can be prescribed by the GP. I pay by direct debit for my prescriptions until next month when I won't have to pay so the amount of cream I have to use does not cost me any extra. I also get the pain and heavy feeling in both legs.

Unfortunately there are lots of cases where Lymphoedema does not get diagnosed for years like yourself. The Lymphoedema Support Network as already mentioned by AnneBury are excellent, the advice line is really helpful.

Best wishes

Susan

Catlady568 years ago

Hello Butterfly Lady, Thank you for your reply. I have had a look at the Lymphoedema Support Network website and it does look very useful.

I am lucky to be living in Wales where we don't have to pay any prescription charges, unlike England. Having said that the GP I saw regarding my swollen legs and feet only prescribed antibiotics and no creams at all - he didn't even mention skin care. It was the Practice Nurse that has referred me to Lymphoedema Clinic. The Clinic is a mobile unit and is run by Tenovus cancer care, so I'm already feeling like a fraud before I even get there as my problems are not cancer related. I am hopeful that they will be able to prescribe either bandage wraps or compression socks as I can see that they are very expensive to buy. I'm using Sudacreme on legs which is working better than E45.

I've always thought that swelling would just go away on it's own and made excuses for it, such as, well I've been standing for hours, or weather is too hot, too cold, it's my age, I'm overweight, etc etc. I look back at past photos (very past!) when I didn't have swollen legs and think, oh yes that's what my legs are meant to look like. I count my blessings really as legs aren't massively swollen (yet) and I don't have cancer and it's not primary lymphoedema. I think it is caused by untreated varicose veins and me being too daft to realise that a problem was happening. I would like to be more "comfortable" and be able to get normal shoes on. I don't expect legs to ever win a beauty contest.

Good luck with your campaign for lymphoedema treatment for non cancer causes. You should not have had to go private to get treatment. Wales is the home of NHS. Aneurin would be turning in his grave if he knew how the NHS is now. Maybe when/if it gets properly funded, we will get equal treatment.

Butterfly-lady in reply to Catlady568 years ago

Sorry not to have replied quicker, I agree with you about the NHS and Aneurin Bevan, even more so now the Tories are in power alone. I have recently had to replace all my sandals as none of the ones in my wardrobe will go on. Fortunately Hotter had a sale on but I still can't really afford to do this given that I am not working.

I am still waiting to hear when the new clinic for treating non cancer treatment related patients is opening.

warm regards

Susan

Reply (0)Report

Catlady568 years ago

Hello Susan, Thanks for that. I had my first appointment today at mobile lymphoedema clinic. They were excellent and I have been measured up for two pairs of compression knee highs for both legs. I was given choice of knee highs, stockings or tights. I have also been given five different samples of various moisturising creams. When I decide which one suits my legs best, I will be prescribed large pump dispenser size. I was also given full advice on skin care and management of my swollen legs. They will monitor how I go on compression treatment and then they may do doppler tests on my legs as my feet are always very cold, chilblain prone, and not a good colour.

I told them I felt a fraud as it was Tenovus clinic and I don't have cancer. They were very reassuring and said that 50% of their patients are like me and not cancer related. All of my treatment is covered - for free - under NHS Wales, so I can't complain at all and am very grateful that I live where I do. Labour are in charge of Welsh Assembly and NHS in Wales, so even though we might die waiting for ambulance to arrive here as they always miss their targets, if you can get yourself to the help unaided, then NHS works.

I do agree completely about the price of footwear for swollen feet. I can currently only get on my Crocs or trainers - loosely laced up. Cosyfeet and the like are extortionate, even with my VAT exemption, so am looking on Ebay! Keep on fighting on good fight.

Regards, Marian