Lymphoedema stories
Betty's Story
My name is Betty, I live on a sheep and cattle property with my husband David, in Central Queensland.
My experience with cancer began in 1977, when my husband, found a small lump in my right breast and insisted I go to the doctor to have it checked. This happened just before Easter. Strangely I was not concerned and the doctor assured me there was nothing to worry about.
As I began experiencing some niggly little pains I became concerned and visited a second doctor for his opinion. He suggested that I see the flying surgeon on his next visit. The surgeon advised I have the lump removed and sent away for analysis, then we would be sure. Sometime after, the doctor phoned David and asked us to visit as my results were back. We were both very shocked to learn that it was cancerous. Apparently the pathologist in Rockhampton was not sure and sent the sample on to Brisbane where they discovered some malignant cells. The flying surgeon said he would take a section of the breast and send it to Brisbane for analysis but we decided to go to a surgeon at Southport for his advice. As it was now the middle of May and some time since the lump was removed, the surgeon suggested a complete removal of the breast and the lymph nodes under the arm. This we had done the following day.
Everything went well, the report came back very promising. The cancer had not spread and all the lymph nodes were clear. No further treatment was necessary and I was greatly relieved not to need chemotherapy or radiation. Now I only had to get well, and strong, and back on my feet again.
I was having the usual problems with my arm, stiffness, weakness, limited movement, and swelling of the arm tissues. I was assured my arm would become better with exercises. I was to do creepy crawly spider exercises up the wall every day. This was useless with my arm so I went to a physiotherapist for further exercises.
I came home in the middle of June just before our eldest daughter's twelfth birthday. We had three daughters aged 12, 10 and 8, and decided to be honest with the girls and tell them what was happening to me. I think they coped extremely well. We all just clung together and weathered it through. I tried to carry on as normally as possible. I think we emerged closer and stronger. My husband was marvellous and very understanding and patient. He took a lot of the load and had to put up with a person who was difficult to live with some of the time.
My arm seemed to get worse and my shoulder very painful. It was decided that I had a frozen shoulder and needed further physiotherapy. I later discovered my tendons had shortened preventing movement. We found a physiotherapist living in the Muttaburra area so it was arranged for me to spend time with her to get my arm working with treatment and exercise. Kind friends and my sister looked after the girls for me. As my physiotherapist recommended swimming I arranged to go into the nurses pool in Barcaldine with another friend, who was a retired physiotherapist, to swim once a week. She was also able to check my progress. By about Christmas time my arm was much stronger and I could put my head on top of my head. My doctor was surprised as he thought I may not regain full movement of my arm.
I always go back to the surgeon in Southport for a yearly examination and mammogram. I have had three lumps removed from the other breast, all benign. I did find it hard to accept and live with cancer, and the loss of a breast, and the use of my right arm for a while. I found friends and relatives very supportive. I did not receive any help or counselling after the operation before I returned home. My doctor did remark after one visit that they don't usually send women home to a desert island after surgery, to cope by themselves, but care and nurse them along for a while. I did go to visit other women I knew with the same experience. It does help to talk with others. Do let other people help you if they want to.
I would always advise going away to have lumps or problems checked out by doctors dealing with cancer. The doctors out here are very good and do their best but are not dealing with cancer every day.
I do thank God for every day. Life is precious and wonderful.
Laughing (or Languishing!?) in a Lymphatic Limbo
Have you ever been shopping, tried on a really smart outfit and said "No thank you"?
Salesperson: "Can I show you something else perhaps?"
"No, not unless you have a left arm size 18 and a right arm size 14!"
Then, because you're sick of explaining you walk away angry? OR...
Shop assistant seeing elastic sleeve: "How did you hurt your arm?"
Response (depending on your mood): "I fell on it when I was sky-diving"; "I swung too hard at golf"; "I did it bungey jumping" and even if you're honest "It's a complication following breast cancer", you're guaranteed a strange look!
What is lymphoedema? It's a ....
L |
et down or a lesson (?) to our once lithe limbs. |
Y |
ukky 'cause it's yours, so let's YELL .... not yelp! |
M |
alingerers? Not us! But it causes mayhem and misery as we manage it. |
P |
assion and plausibility must prevail. |
H |
ags we are not; hope is high for help on the horizon! |
O |
versized, overwhelmed and overtaxed are we. |
E |
steem we must elevate and ever evaluate. |
D |
issent and dissatisfaction we disseminate with determination, and |
E |
xorbitant costs we expend - equanimity must equate. |
M |
assage must by Medicare be met, |
A |
n abomination are our arms, so let's not accept such an affliction! |
From a loopy, lopsided lymphoedemiac who longs for lovely limbs!!
Lymphoedema - "A pain in the neck"
Lymphoedema, to me, really is a pain in the neck. Or to put it another way, a big, fat F. FRUSTRATION!
I had a partial mastectomy in August 1996, followed by six weeks of radiotherapy. I had a vague idea that I might have trouble with my arm as a result, but my surgeon dismissed my questions. It didn't happen nowadays, he said. A nurse gave me a run- down on things to avoid with the at-risk arm, but there was no explanation of the reasons behind the list. My surgeon doesn't believe in his patients having too much information about their condition - our first frustration - so I didn't have any contact with the Breast Cancer Support people until I got home from hospital.
Early last year my arm and hand started to swell, and I began to have cramps in my hand. Apart from being painful, I was having trouble holding things and found it difficult to turn on taps etc. My GP said "you've got a bit of lymphoedema there", with no suggestion about treatment. I felt that the implication was that I should be grateful I was still alive, and should stop moaning about a minor inconvenience like a swollen limb. My surgeon said that he was so good that none of his patients got lymphoedema, and I should blame the radiotherapists. What a great help that was.
My husband and I decided to chase up some information ourselves. This was our second frustration. Easy to understand, comprehensive information is hard to come by. The Cancer Council's information is all right, but wasn't comprehensive enough for us, and the library was no better. A search on the internet yielded more information and we began to have a better understanding of the how and why of lymphoedema. More importantly, we realised the importance of getting treatment and learning how to manage the condition.
Pat Mathew
Cassie's Story
In June 1995, our lives were turned upside down. I discovered a lump in my breast the size of a hen's egg. At the time, we were planning a trip to the rainforest of North Queensland to celebrate our twenty-fifth wedding anniversary. However we cancelled all of this in favour of rushing straight to Brisbane. We elected to go to St Andrews Breast Clinic, where, incidentally, I had conscientiously had a mammogram each year for five years.
Brisbane is 1250 kilometres from home - a large sheep and cattle property, 300 kilometres from Quilpie in the far south-west of Queensland.
We were incredibly fortunate to meet our Dr, who worked with the clinic, and who was called in to examine me. The lump was so large and obvious, but did not show up on the mammogram or the scan. Chris did a needle biopsy, but told me the lump would have to come out no matter what the result. Even this test didn't positively identify any cancer cells! So out of three tests none showed cancer. Lobular Carcinoma (which is rare) does not show up on these tests. This points to self examination and manual examination by doctors as being a very important diagnostic tool, and I would urge women not to rely solely on mammograms and scans, but to routinely check their breasts so they can pick any changes that occur.
One day of frenzied waiting, and into St Andrews on Saturday. Chris removed a lump and found it was cancer. However by some slip up, I had not been asked to sign the form giving permission to do a mastectomy if necessary, so, on Sunday it was back into the operating theatre where the mastectomy was performed, and about fourteen lymph glands removed - one of them proved to be cancerous.
So instead of our exciting trip to Cairns and the Daintree, we celebrated our anniversary in St Andrews - complete with champagne, smuggled in by my wonderful and irrepressible sister. My wonderful, wonderful family and friends rallied around to support me, and if I hadn't had them all, and the avalanche of flowers and messages, I know I would not have coped as well as I did.
We now faced the dilemma of my having to undergo six months of chemo. At home was our four year old daughter penelope, being looked after by our 20 year old son Geoffrey, and the little matter of running the property, which is, of course, a huge job. My husband decided we would stay in Brisbane for the duration, and Penelope would come to us. Our other daughter Susie (22 years old) left her job in Mackay, and came to Brisbane to help and support us. So we were indeed fortunate to have such wonderful kids. Susie in Brisbane to cheer us along, and Geoffrey at home looking after the property, where he spent many long weeks completely alone. Geoff (my husband) went home several times during the time. The strain on him being stranded in Brisbane looking after a sick wife must have been enormous, but he never once complained, or gave me a hint of being fed up.
We went to a great support group called PACT at the Wesley Hospital, which was very informative and helpful. This is Medicare approved so cost us nothing.
All in all, I was so very fortunate that all the circumstances combined so that I had the most supportive environment and the very best medical care Australia has to offer.
The flip side was that it cost us a fortune, as we rented and furnished a unit, and being away from home was a huge disruption to our lives.
The next fortunate meeting I had was with an holistic doctor in Brisbane.
When we finally arrived home, I was zonked as a result of the chemo. I was chronically tired and I had suddenly, almost overnight, developed painful arthritis.
A holistic doctor, who treats the whole body, immediately told me my liver and pancreas weren't functioning well, and my immune system was very low, and I wasn't digesting my food, or indeed, eating the right food. What a list! Anyway, about 2 months later, having followed his gluten and dairy free diet, and the vitamins etc he prescribed I felt a million dollars! No more tiredness, and no more arthritis! I wish every cancer patient could be lucky enough to have my doctor.
The change I'd like to see in cancer treatment would be for mainstream doctors and teaching institutions to recognise the huge value of the kind of treatment my doctor has given me. It makes sense that all those chemicals being pumped into the body are going to overload the liver, and cause problems, but this was never mentioned to me by either my surgeon or by my oncologist. Neither was it mentioned at PACT, which covered nutrition as one of the many truly helpful workshops we attended. Another really important fact not mentioned was that the chemo, will cause ongoing problems with the immune system. One is carefully monitored during the treatment, as the chemo knocks the white blood cells out, but after it is finished there is no mention of ongoing problems we will encounter with our immune systems!
In my opinion, a holistic approach to Cancer care is absolutely essential. The effects of chemo and radiation on the human body are so drastic, that of course they cause major side effects, and this must be addressed by mainstream medicine. It is a fundamental flaw in the system. It is wrong that when patients are at their lowest, physically and mentally, they are forced to sift through the legion of books on the subject, and to seek out a doctor to help them. Many people resort to naturopaths and the like, who have no basis in science, and who do more harm than good in some cases.
Furthermore, I urge cancer patients to take charge of their own health and not passively allow the specialists to take over.
After my operation, a bone scan showed a fairly large abnormal "thing" in my hip bone. My dear surgeon was very upset for me, and broke the news to us that it seemed to be cancer that had spread to the bone. Devastating for us all! My oncologist agreed with him. He gave us the option of a bone biopsy to make sure, although he was sure that it was cancer. He then casually said "we could do a cat scan of the area, I suppose." Obviously not at all convinced it was a good idea, and not keen on this option, I immediately said "Let's do it!" When this was done the "thing" was obviously not cancer, and it is still a mystery, but not cancer!
It's now two years since the chemo, and my immune system is still low, but my doctor is working hard on it, and it is slowly improving. I feel very well. I have a very positive attitude, and very, very seldom think about the possibility of cancer rearing its ugly head again.
Lyphoedema - No! It won't happen to me!
It all began five years ago, the year I turned 50, and the first time I had ever had a mammogram. That day I was told that the mammogram had picked up a small tumour which showed all the signs of being malignant. Like all breast cancer patients I assumed this only happened to others, definitely not to me.
Over the next few months, with lots of tender loving care from a wonderful surgeon and a very caring and supportive family, I joined the ranks of women who had a mastectomy. Little was told to me about the after effects of such surgery, however I was interested to read as much literature as possible. Fortunately my tumour had not spread to the lymphatic system so I was released from all the after-treatment so many breast cancer patients have to endure.
This meant plain sailing for me. I had a positive attitude and an opportunity to share with other newly diagnosed breast cancer patients the feelings and experiences I had gone through. I had read about lymphoedema but again all the literature I read made me a very unlikely candidate ... or so I thought.
Six weeks after I was diagnosed with breast cancer my best friend, Jenny, went through the same frightening experience. Lymphoedema entered both our lives when Jenny's arm started to swell shortly after her mastectomy. We would often share our concerns and her remedies for this complaint. Unfortunately 18 months later Jenny died of the cancer that started in her breast. I still had no sign of lymphoedema.
It was three years after my mastectomy that I noticed a slight swelling in my arm, nothing much to worry about ... it will go away.
My daughter was pregnant with her third child and lived five hours away. She was very ill and spent eight weeks in hospital and the two boys aged three and 20 months needed to be cared for. I had forgotten what it was like to have two little boys that needed to be loved and LIFTED all of their waking hours. It was from then on I began my new experiences on the lymphoedema road.
My GP was most concerned as he looked at my swollen, very hard, and infected forearm. He at once diagnosed the problem, gave me some antibiotics for the infection and sent me to the local hospital for lymphoedema treatment. Over the week I was given exercises to do and fitted with a very tight bandage and told to go home.
Over the next few months I persevered with the exercises and wore the tight bandage until I could stand it no longer. The bandage was so tight that circulation was restricted in my hand and under my arm and around my elbow was bleeding. The bandage had to go. My whole arm had swollen to three times it size, it ached and I could not wear any of my clothes. What could I try next? Enter an angel...
At my usual six monthly checkup with the breast cancer specialist I shared my concerns with him about an ever swelling arm. It was then he told me about a patient of his, Sister Val (a Catholic Nun) who had just come back from a month in Sydney having had very successful treatment for lymphoedema.
Could this be the answer for me? I hurried home with the pamphlet firmly in my 'good' hand to make the phone call that would give me the chance to alleviate the pain, heaviness and the fear of infection that was my constant companion.
My appointment at Mt Wilga Private Rehabilitation Hospital at Hornsby in NSW meant an early start from Canberra. A very understanding doctor who specialised in lymphoedema assessed me as a possible patient and explained to me that it would be a life long commitment on my part for the treatment to be effective. We left Sydney that day having made a commitment to four weeks live-in treatment at Mt Wilga, me with trepidation and my husband with confidence that it was worth a try. So I set off on Easter Monday 1997 for four weeks of tender loving care.
The physiotherapist in charge of the Lymphoedema Clinic welcomed me as a friend (at the conclusion of the four weeks I felt I was saying goodbye to my best friend). She quickly explained to me the form of treatment I would be having and what was expected of me as a patient and what my arm could reduce to. The accommodation in a hospital and the care of the staff given to each patient was very reassuring.
The four weeks consisted of lymphatic drainage (massage) each day measuring the affected arm, firm bandaging and an exercise routine. I could not believe the difference, my arm had reduced 70% in size. It was the first time in 18 months I could see a wrist.
At the conclusion of the four weeks I was fitted with a full elasticised sleeve with a separate hand which I must wear 24 hours a day. Brenda taught me how to do self lymphatic draining and with the help of my very supportive husband, who was taught the finer points of back lymphatic drainage by Brenda in 30 minutes, we tackle the task daily. Along with regular arm exercises I am keeping the swelling at bay.
My lymphoedema has not gone away but it can be managed. I find that during the hot weather my arm will swell a little more, the sleeve is hot and uncomfortable and if I travel, I have to keep it elevated on a few pillows, but this is not a very high price to pay for a limb that is at risk if lymphoedema gets out of hand.
Mt Wilga provides follow up treatment and advice or support is only a phone call away. The Lymphoedema Unit organises an open day once a year for those who wish to talk over problems with the staff or meet others with the same problem.
There is hope for you. If you have any signs of lymphoedema please make sure that you seek help from someone who is experienced in its treatment as soon as possible. I know that this treatment is available in South Australia and other hospitals. Please ask your doctor or contact me on (02) 6281 0957 if you would like further information on the treatment I received at Mt Wilga Rehabilitation Hospital or phone the hospital direct on (02) 9331 5253.
I met up with my angel (Sister Val) while I was a patient at Mt Wilga, She had had an eye operation and was unable to do her daily massage and her arm was swelling again... My pysio to the rescue.... Sister Val's arm was back to "normal" in a week.
Pam Robertson
No Longer a Wilderness?
Not so many years ago, women, when told they needed to have a mastectomy, would ask if they would get a fat arm. It seemed that for many it was an anticipated and dreaded sign of breast cancer treatment.
Their concerns were dismissed as it was said to be not much of problem in the eyes of the surgeons and radiotherapists, or if it did occur it was then said it was a small price to pay for successful treatment of breast cancer.
Well it is still a significant factor as this edition of The Beacon testifies. Now however we can discuss treatment programs provided by trained therapists and at last the consumer's voice is being raised and will be heard.
Having worked for over 20 years with women who have had breast cancer, I am familiar with the struggle to have this condition put on the breast cancer agenda and ponder why there is still such struggle.
The Breast Cancer Support Service was established in 1975 as a national service and as State Co-ordinator in Queensland, I travelled throughout the state for years, setting up services and meeting hundreds of women treated for breast cancer who volunteered to help other women just diagnosed.
From the beginning, I was made aware that lymphoedema was a distressing hidden condition. It seemed that if it was acknowledged as a problem then the hapless woman would be told "that nothing can be done" and to "learn to live with it". This was not only in Australia but all around the world.
In 1987, the European consultant for Reach to Recovery, Francine Timothy wrote saying it was rather a hushed subject there. However some action was being taken in Britain with the formation of the British Lymphology Group in 1986 which recognised "a need to improve the treatment of lymphoedema sufferers and to overcome the neglect of this branch of medicine".
Strangely enough post mastectomy lymphoedema in Australia was the subject of a Florence Nightingale Scholarship in 1984 by the Radiotherapy Unit's charge nurse at The London Hospital. Having contact with her, so soon after doing my own research "Lymphoedema - is it a problem?", confirmed what we both knew that information for patients and health professionals was scant, that most doctors either denied its existence, turned their backs on it saying nothing could be done, or offered vague advice or a pat on the head.
I have no doubt that the doctors and other health professionals spoke more frankly to an overseas visitor never thinking that their comments added fuel to my fire and a determination to bring about change.
In March 1986, the magazine "New Idea" published a letter from the BCSS Co-ordinator in WA. It was in response to an article on the use of a pressure pump for lymphoedema and some inappropriate advice. Her letter recommended that readers make contact with their local BCSS to find out about the lymphoedema clinics like they had at Sir Charles Gairdner Hospital.
The rest of us were inundated with inquiries from confused, disheartened women who lacked explanations and understanding. They wanted help, care and support and at least someone who would acknowledge at was problem!
The difficulty was then to whom to refer. Some physiotherapists had been using the pressure pumps with minimal success, others offered exercise, but most were unsure of what to do and many rang me for advice. No wonder we were going around in circles! Occupational therapists proved to be my best allies at this particular time for assessment and management, as was the case in Perth.
In 1989 we formed a Queensland Lymphoedema Advisory committee consisting of Physios, Occupational Therapists 's and Registered Nurses and a couple of doctors who tried to be sympathetic but were somewhat bemused by our depth of concern. We aimed to educate the health professionals who could or should be treating the condition and those caring for women in the post operative phase.
However it seemed that the only place that lymphoedema was really seriously being researched and treated with meaningful results was in South Australia by Drs John and Judith Casley-Smith and Neil Pillar PhD. Through their endeavours we learned about the work of Michael Foldi and his wife Ethel in Germany who brought a whole range of existing techniques together to develop the Complex Physical Decongestive Therapy. This formed the basis of the treatment program developed in the second part of the eighties by the Casley-Smiths and practised by Michael Mason in Adelaide. With some variations and modifications it has come to be known as Complex Physical Therapy or CPT.
The first ever training program for therapists in English anywhere in the world, and the first in any language outside Germany, was conducted in 1990 in Adelaide, and at last there was team of people able to implement a program that was proving to be effective.
With sponsorship from Jobst a Beiersdorf company producing lymphoedema, aids and appliances, occupational therapist Sandra King and co-authored the first national information brochure titled, surprise surprise; "What is Lymphoedema?", and is still in circulation today through treatment centres and support groups.
This was an initiative of the national committee of the Breast Cancer Support Service, which had from its inception been advocating hand and arm care in the information given to every women seen by this service.
And so lymphoedema seems to have come out of the wilderness with trained therapists and treatment centres available in many cities and towns throughout the country. Support and self help groups and associations have been formed in all the states and territories, remembering of course that lymphoedema affects a wider population than those treated for cancer.
So why is there still the feeling that we are not out of the woods yet? Is it that there is still a disbelief in the medical fraternity that it is a problem, that too much it being made of it and that you only need to do something if it becomes a problem? Why is there resistance to the preventative measures listed in most patient guides? It does not suffice to say that the research has not been able to prove their efficacy! It is time for some lateral thinking.
Whilst we have come a long way these last 10 years or so, there is still so much more to be done. I really believe that it will be this network that will make the difference for it seems to me that the answer to "Whose Problem?" will ultimately rest with those of you at risk or who have lymphoedema as a result of treatment for breast cancer.
Anne Fletcher
RN Cert Adv Breast Care (UK)
Breast Link, Brisbane.
(07) 3399 5237
Lymphoedema and Aromatherapy
I work as a Vodder Manual Lymph Drainage (MLD) massage therapist and use aromatherapy as a complementary and preventative therapy. Most of the clients I treat have secondary lymphoedema associated with surgery and/or lymph node clearance, eg. lumpectomy, mastectomy, hysterectomy. The remainder have primary lymphoedema, a congenital abnormality of the lymphatic system. All are at different stages in the process of coming to terms with the fact that lymphoedema is a chronic condition with major implications for lifestyle and self image.
The Vodder Manual Lymph Drainage is an extremely light massage, which moves only the skin. This action moves the lymph before it enters the lymph vessels, enabling the redirection of lymph to the existing and functioning lymph nodes.
Clients with lymphoedema are not recommended to have the style of massage usually associated with aromatherapy. Massage of this type requires the application of pressure in order to manipulate the musculature. This stimulates the blood flow, dilates the blood vessels and creates warmth. It also temporarily increases the size of the body and the closure of the superficial lymph vessels.
These usually beneficial aspects of massage are not helpful to the lymphoedema sufferer. They would be most likely to feel bloated, tight, uncomfortable and there may be risk of physiological damage.
The lymphoedematus limb requires special care to prevent cellulitis which is systemic and can be severe. The symptoms are similar to those of influenza. The limb becomes fiery red and painful, and hospitalisation is often necessary, requiring treatment and intravenous antibiotics. Clients are advised to avoid any cuts or cracks in the skin where bacteria or virus can enter. Emphasis is placed on moisturising the skin, protecting it with clothing and avoiding direct heat of any type. Gentle exercise and the wearing of compression garments are advocated to control, maintain and prevent any increase of the lymphoedema.
To complement the MLD treatment I suggest clients use aromatherapy without massage, eg. vaporisers, baths, showers, cream, compresses, on tissues etc. Aromatherapy can assist with care of the limbs and the psychological aspects of living with this chronic condition.
Initially I try to keep to the "simple", economical essential oils, give straight forward instructions to ease the introduction of yet another new aspect to clients lives. If you would like to know more about lymphoedema, have a demonstration, make a comment, or indeed, need to refer a client, I would be glad to hear from you and I am contactable on (03) 9553 3853
Avril Lunken
Lymphoedema, a curse without a cure.
"Do not worry about your arm" said my surgeon about 14 years ago when I was diagnosed with breast cancer in my left breast. My treatment was to be a mastectomy as I had a very aggressive hormone induced cancer, ancillary clearance under my arm was needed, and also twelve months of chemotherapy and radiotherapy. I also had my ovaries removed at a later stage, to try and protect me from further breast cancer. Hormone replacements and problems associated with replacements, were not very easy to deal with.
I was nursing at the time that I was diagnosed with breast cancer. I also had a young family (2 teenagers and a seven year old daughter) and also a very large garden to look after. My husband was busy with his career at the time. I was never a person to sit and think about my lot in life, thus I wanted to get "on with it". I had never given my arm much care.
Soon after the mastectomy I did get a swollen arm and hand, but this seemed to settle. I never knew what the cause of the swelling was at the time, and although I seemed to have a sore aching arm, I thought that was how things were going to stay. I was still alive, and so what kept me going was to keep telling myself not to dwell.
I quickly realised that lifting heavy patients was no longer going to be easy for me, so my job as a nurse was abandoned for the time being. I decided to stay at home and care for my family for a while.
As life seemed to become normal again and things at home settled, I decided to do some training and become a Breast Cancer Support Service Volunteer, as I found that the help I got from my visiting volunteer was the most helpful part in my recovery from breast cancer. I have been doing this work for many years now. As volunteers we are not supposed to worry patients about the possibility of getting lymphoedema. We tell them to take precautions with their arm, but not to be unduly worried about this, as only about five percent of breast cancer women get lymphoedema.
In the meantime, my own arm was getting much larger and heavier than it had ever been. The tissue of my affected arm was getting very hard and solid. The aching and heaviness caused a lot of back and neck pains. Although miserable with pain, I was not going to give in! Until one day when I could no longer button up my sleeve on my shirt. I was now wearing a size 22 (my body size was 16 at the time!). I was sent to see a Professor who is doing lots of good work into the research and treatment of lymphoedema and the possible prevention of this awful problem. Neil Piller referred me to all sorts of people to try and improve my arm situation. Not an easy task, as not much seems to work.
I was sent to a wonderful physiotherapist who when set to work tried her best to improve my arm. Private insurance is required, and these treatments are never covered adequately. The expense is great to the patient, and in my case I found that three growing children came first with their needs.
During 1997 I got my next primary breast cancer. This time I needed the same treatment as before. I had stage three cancer and my right arm was involved. I have always been left handed, but because of the lymphoedema I learned to do things with both arms. Writing and painting (I am a painter!) is only possible with my left arm. I have had to get a speaker phone as I could not hang on to the phone for any length of time. Ironing is never done as it results in a sore neck and shoulder for the next few days. Vacuuming is another impossible job. I have lived by myself for several years now, and as before, I manage most of the time, the impossible chores are just not done.
Coping with lymphoedema for me is going to be very much a problem. I know that the medical profession are having many thoughts about whether to have ancillary clearances or not. However for people like myself, there seems to be very little choice in the matter. All I can do is keep going and hope that in the future the situation may be improved.
Elizabeth Libregts.
SA
Lymphoedema - Due to Malignant Disease - Whose Problem?
On reflection I found it harder to come to terms with lymphoedema than the breast cancer. After surgery followed by radiation at age 32 years, it was a case of caring for my husband and young family and getting on with living a full and happy life.
In the early stages of lymphoedema, 11 years later - yes! I was still alive, but my quality of life was drastically reduced. My doctors, and they are wonderfully caring doctors, were reluctant to acknowledge the possibility of lymphoedema after 11 years without any signs or symptoms at all. They were also reluctant to prescribe antibiotics.
Initially arthritis was diagnosed and the appropriate medication was prescribed as soreness and puffiness developed around my elbow, but with no improvement. Physiotherapy was recommended and treatment included - elevation, ice, compression and use of the tens unit. A frustrating time, even turning the pages of a book was awkward!
By now my upper arm was painful and finally antibiotics were prescribed - use of the tens unit ceased.
Next I was referred to my specialist and lymphoedema was confirmed. Diuretics and penicillin were prescribed to be taken every day (and I thought, for the rest of my life). I was not impressed - I might add here that I started eating far more yoghurt to try and replace some of the "good" bacteria (I queried the use of diuretics without potassium!). Elevation and ice treatment continued with the physiotherapist and I then purchased my large ice pack and the ritual continued at home. Ice packs are impossibly heavy to cart around!
I asked the physiotherapist what was the worst thing that could happen to my arm - after consideration he replied "gangrene"!! Well at least I now knew where I stood. I attended a demonstration showing the benefits of aerobic exercise and with explanations of the lymphatic system this further helped me to understand the problem. It was important that I understood and could consequently cooperate.
By now my arm was demanding more and more attention. I rested it against doors, walls, on friends' shoulders, the backs of chairs, pillows, my head (this caused some interesting comments), whether preparing meals, shopping or sleeping. (I think Pam Ayres could compose a good poem about this). Two hands were no longer free to participate in my interests.
A tubigrip stocking was recommended for use at night, but I found this too hot. The cooler night air and elevation were more advantageous. A hook in the ceiling, with spring attached, was hooked into the cuff of a sleeve of a shirt that I wore. This kept my arm aloft but interfered with sleeping. I wasn't free to roll over and curl up - but I persisted.
By now I had the loan of a jobst pump through the Health Department (This was not a new pump). I found that if used for any length of time it interfered with my breathing and made my heart race.
I found I was gaining weight, became very lethargic, felt continually exhausted, experienced dizzy spells, nausea, headaches, difficulty in breathing (filling my lungs), feelings of panic, peripheral paralysis in my left cheek and my blood pressure had risen (If I ate half a banana I could have run a mile). I honestly felt I was dying.
My doctor initially treated me for stress and prescribed medication that left me feeling woozy - I wouldn't take any more tablets. Next he gave me some relaxant tablets and suggested I reduce my carbohydrate intake. Consequently I tabulated everything I ate and recorded the carbohydrate content. It was then recognised that certain patterns went with the symptoms. My doctor consequently sent me for a glucose tolerance test which showed I had "low blood sugar". A diabetic diet was resorted to; a little food often. My excess weight quickly fell away - and all the awful symptoms disappeared.
The Jobst pump had again broken down - the first time I was without it for six months whilst repairs were affected in Brisbane. Now this time it took the agents service department nine months to tell us it was irreparable. During this time many calls were made to Brisbane both by the Bundaberg Co-ordinator and myself with little information forthcoming. Now I have purchased an Australian made pressure therapy pump - neat, compact and effective.
My husband had a type of IV stand constructed, with an extended arm and on castors. This supports an inverted pillow case and the pump sleeve. Being mobile, I wheel it to a chair, bed or wherever it is required.
A handle was fitted to our car on the passenger's side and a special sleeve was made which supports my arm in a comfortable position above my heart. This is suspended from the handle. While driving I often support my arm on the sunvisor of my car to keep it elevated.
A rubber ball is handy to squeeze while the arm is elevated - especially by the telephone.
This now brings me to the title of this article "Lymphoedema - due to malignant disease - whose problem?"
For me, as you have heard, the problem has been shared by several facets of the medical profession. This is so vital I am thankful for caring for caring and concerned doctors.
But now I see the patients need for:
- Education in prevention.
- Early diagnosis and treatment.
Information and education so that the patient can co-operate. - Imagination and initiative in managing the problem.
- Understanding in coming to terms with it.
- Advice on how to manage problems in individual cases.
Too much has been left for patients to ferret out for themselves.
Now, six years down the track, I see this as predominantly my problem shared with my husband. A problem that is not only physical but touches on the emotional and spiritual me.
I liken it to a three legged milking stool - omit any one of the three and life could be shakier than it need be.
To sum up -
- Weight control
- Exercise
- Antibiotics
- Compression sleeve
- Use of an inverted pillow attached to IV stand.
- Intermittent pressure therapy pump
- Limb care protection - eg. rubber gloves etc..
As a volunteer visitor I believe many women do not absorb the information and warnings given on hand and limb care when we visit in the early days after surgery - many other considerations are uppermost in their minds.
I recognise now that it was probably two years ago that I stopped fighting and came to terms with the condition.
A verse of scripture comes to mind "cast all your anxieties upon him [the Lord Jesus] for he cares about you" this I have done. I'm fortunate that deep down I have the assurance that God loves me and know my every need.
I have cried to him in distress and been relieved and found peace.
I have prayed for guidance in the handling of my arm.
I have prayed for the doctors, that they be given wisdom.
I have read the scriptures and been encouraged.
And I can say that I am leading a full and rewarding life.
Heather Rutherford
B.C.S.S.
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