Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
I saw that your post had just popped up while I was trying to catch up on some of the others.
You are right. It is a long time to wait for results, but that is the way it often is. I did not ask them why it takes such a long time because I am pretty sure it is because the system is overloaded. Goodness only knows where these things are sent. I do remember that the biopsy taken when I was diagnosed with breast cancer was sent to Cornwall. I think the NHS is huge and is very fragmented. Did you know that the NHS is the biggest employer in the world? That cannot be good for the patients. Small towns are suffering as their hospitals are closed down and everything is centralised. There does not seem to be any understanding of what patients go through with fear and anxiety while waiting for results. This latest saga with me started back on October 10th and I have one appointment with the lymphoedemist and the appointment this week to remove the mole. I am really looking after myself and following any instructions given.
I have no complaints with the staff. They are completely dedicated.
Today on the news the head of the Royal College of GPs has recommended that patients look up their symptoms on the internet and try to decide what they have. This is a recipe for disaster.
My compression sleeve did get sorted out. They are not really made to measure. The lymphoedema specialist measures the arm in different parts really to work out the girth and how different it is to the normal arm. There are then three different classes of compression sleeves, class 1, 2 & 3. I was given a temporary one, class 1, and then two class 2 were ordered and they arrived pretty quickly at my home address. The class 2 strike me as very tight and I shall discuss this at my next appointment on January 30th. I am wearing it but while my scar recovers I shall wear nothing or the class 1.
I now feel perfectly normal, but tired. The strange feeling from the anaesthetic has worn off and I have no pain.
It is certainly true that the weather around the world seems to be extreme. Here in the UK we are having colder and wilder weather than usual. Can you remind me exactly where you are in the States?
Are you doing anything special for New Year's Eve and New Year's Day? Do you celebrate twelfth night on January 6th? Are you making any New Year's Resolutions?
Wishing you a happy, healthy New Year.
Love.
Sylvia xxxx
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Hello Marias,
Thank you for your very kind words. It is kind of you to think of me when you are going through so much.
Yes, it is a long time to wait for the results. Look at my last post to Mary and you will see my explanation.
I do feel more relaxed and I am not so anxious today. I think it is a bit like when we are waiting for results when we are going through cancer treatment and when we finish them and wait for check ups. Anxiety and relief are our travelling companions with this disease.
I was sorry to read that you have influenza, what we call flu. I do hope that the antibiotics will cure this and that your temperature will become normal. I do hope this is not cellulitis which is a common and serious infection that can be caused by lymphoedema.
I am sending you my fondest thoughts and wishing for you a happy, healthy New Year, when you can say goodbye to all the health problems you have had this year.
Happy New Year, Marias.
Abrazos
Sylvia xxxx
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Hola Marías,
Gracias por sus amables palabras. Es amable de tu parte pensar en mí cuando estás pasando por tantas cosas.
Sí, es mucho tiempo para esperar los resultados. Mira mi último mensaje a Mary y verás mi explicación.
Me siento más relajada y no estoy tan ansiosa hoy. Creo que es un poco como cuando estamos esperando los resultados cuando estamos en tratamiento de cáncer y cuando los terminamos y esperamos los controles. Ansiedad y alivio son nuestros compañeros de viaje con esta enfermedad.
Lamenté leer que tienes gripe. Espero que los antibióticos lo curen y que su temperatura se normalice. Espero que esto no sea celulitis, que es una infección común y grave que puede ser causada por linfedema.
Le envío mis más profundos pensamientos y deseo un feliz y saludable Año Nuevo, cuando pueda despedirse de todos los problemas de salud que ha tenido este año.
Feliz año nuevo, Marias.
Abrazos
Sylvia xxxx
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Hello adagio,
Thank you for your very kind words. They were much appreciated. I am pleased to say that this procedure is now behind me and I feel fine this evening. I just have to wait for the results. I am keeping a watchful eye on the dressing and on the arm and so far so good. I was anxious about the Bank Holiday weekend for New Year with doctors' surgeries closed. I just have to get through Sunday and Monday and then it will be back to normal. I have put other details in posts to others on the thread.
I do have some antibiotics from the hospital should I need them. I think the specialist who looked after me wanted to be extra careful with me because of the lymphoedema and because it was a holiday. She went to see one of the consultants and came back with a box of Flucloxacillin. I think she needed to protect herself. She quite understood my reluctance to take antibiotics.
How is life treating you in Vancouver? I know your weather is generally more moderate than in other parts of Canada. How are you celebrating New Year's Eve?
Wishing you a happy, healthy New Year.
Fond thoughts.
Sylvia xxxx
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hi everyone
Just a quick query. Did any of u take Vit D whilst on chemo? Mt vitamin d levels were low so I kept taking my tablets thru chemo. Did anyone else take them?
Cheers kath
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Kath the endocrinologist send me D3 because of the osteoporosis. And letrozol makes the osteoporosis get bigger so I take every day Vitamin D3 2000 L. U. And calcium carbonate 600 hrs.
Abrazos
Marias
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Kath the endocrinologist send me D3 because of the osteoporosis. And letrozol makes the osteoporosis get bigger so I take every day Vitamin D3 2000 L. U. And calcium carbonate 600 hrs.
Abrazos
Marias
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thanks Maria
Did u take it while on chem
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Hi, Sylvia. Just wanted to wish you all the best as you wait for test results. Sometimes things move so slowly, don't they? I hope your wait won't be long. And all the best to a great 2018
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Hello Kath,
To answer your query about vitamin D. I did take vitamin D throughout chemotherapy and throughout all of my cancer journey. It is not good to have low vitamin D levels and I have read that research shows that lots of women diagnosed with breast cancer have low vitamin D levels. I did have my vitamin D levels tested about 2009 and I was told they were excellent. The person doing the testing even asked my breast cancer consultant to congratulate me on the excellent level. I do not remember the numbers used to calculate these levels, but I am sure you can find them somewhere.
Apparently we can get good levels by short exposure to the sun during summer months but we do not need long exposure to the sun and long exposure does not increase the levels. The body will take in what it needs and no more. Long exposure will cause burning and this can cause skin cancer in later years. There seem to be arguments for and against using sun block.
I am still taking vitamin D as it is hard to get it through diet. I take Solgar D3 4,000 IU (100ug) every morning with breakfast. I take it with Solgar Ultimate Bone Support Calcium Citrate supplements. These are balanced calcium supplements and include D3, zinc, manganese, copper, boron, and vitamin K2. You can take four tablets a day but I only take two and I take this for osteoporosis caused by breast cancer treatment and an over active parathyroid gland.
I have read that calcium carbonate is not easily absorbed by the body. It is the one prescribed on the NHS and is cheap, but I have never taken it. I buy my own.
These supplements also have magnesium, half the amount of calcium and this is supposed to be the normal balance.
I hope this helps.
Once again, thank you for your lovely photographs. Keep them coming. They cheer up the thread.
Happy New Year and a healthy one free of worry and anxiety. What are you doing for New Year's Eve and New Year's Day?
Fond thoughts.
Sylvia xxxx
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Hello Marias,
I was glad to see that you are posting and I hope this means you are feeling better.
What are you doing to mark New Year's Eve and New Year's Day?
I hope you read my longer previous post.
Once again, I hope 2018 is a better year for you.
Abrazos.
Sylvia xxxx
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Hello Nancy,
Thank you for your post and your kind words.
I do hope 2018 will be a healthy and happy year for you.
I think if you go to My Profile and click on it and then click on the tab My Treatments, this will allow you to update your treatments.
Fond thoughts.
Sylvia xxxx
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Hello Sarah,
I just wanted to wish you and your mother and family all the very best for the New Year. please keep us informed about how everything goes with your mother's treatment.
I did send a PM a while ago which you may have missed. I would be interested to know your answers to a few things I asked.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to wish everyone posting on the thread, or just viewing, a happy, healthy and worry free 2018. Many thanks to all of you who have kept the thread so strong.
To Valstim, Rhonda and 4everStrong, we have not heard from you in a while and I do hope you are all well. Please pop in and let us know if you have decided to move on.
To all of you viewing, please come and join us if you need help, comfort, support or anything that gets you through your breast cancer journey. Remember that everyone is welcome to join us wherever you are in the world.
Best wishes to everyone.
Sylvia xxxx
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Hi Sylvia
I believe I have heard that the NHS is the biggest employer in the world, that's amazing! I hope your results come earlier than anticipated, I do find that to be the case here often. Then it's a matter of the staff calling you early and reporting results, I suppose. Sometimes these big medical systems seem so impersonal and cold, they are dealing with myriads of patients and seem to forget we are individuals with worries and fears. But I have also found that when dealing with individual employees, even over the phone, they are all very nice people who try very hard to fix whatever problem I bring them. The fault seems to lie in the jumble of departments, and stacks of paperwork they have to wade through to do that!
Patients diagnosing themselves from the Internet is what most Docs I have spoken to warn against! Surprising that the Royal College would recommend that.
About the sleeve, you know more than I but I thought I had read about people having them made especially to their own measurements, I could be wrong about that. It's probably good you have more than one size because I'm sure your arm is at different sizes at different times.
I am in the Center of the USA, in the Midwest, in Missouri. We get all kinds of weather here, we can be extremely cold as we are now, with snow and ice. In the summer we go from hot to very hot, with a lot of humidity. Spring and fall are our best times, lots of greenery in the Spring and cool, crisp fall days with colored leaves everywhere.
I am going to the city with my sis-in-law this weekend, we will visit with friends and do a little shopping. I think that will probably be cut short because of the very cold weather. At some point I want to see the new movie that has come out, called "Churchill". The time period would be right before the big attack on Normandy, Operation Overlord. I will probably not see it this weekend, too crowded I'm sure. I am told there is flu epidemic so have to be careful, I suppose.
January 6 is more of a religious holiday for us, it is the Epiphany, the date of the arrival of the Wise Men to Bethlehem to see the baby born on Christmas. When I was a child our Nativity Scene and hopefully the tree would be left up until then, and then the 3 Magi were brought out and added to the figures of the baby, Joseph, Mary and the shepherds and animals. There is not much fanfare now, there will be church service and that's about it in this area. What do you do on 12th night?
I hope your New Year is happy and healthy, and I hope your lymphedema gets much better and the biopsy turns out to be nothing serious. I will talk to you again soon, in 2018!
Love, Mary
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To all here,
Sylvia, Hanieh in Iran, Pam in US, Marias in Colombia, Lou in Phillipines, Sarah in UK, Kath in Australia, Adagio in Canada, Kath in UK, Valstim in US, 4everstrong in France, Nancy in Canada, Galway in Eire and to anyone I may have missed.......I wish you all a most wonderful and blessed New Year with good health, and improving health for those still going through treatment. I look forward to talking to all of you again soon!
Love, Mary
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Hello Mary,
Thank you for your post.
I am not really counting on the NHS to see me through this. I shall look after myself at home. Appointments with the NHS are really tick the box episodes. I shall keep a watchful eye this week on the surgery site and hope to get the stitches removed at the end of this week. I shall wear the sleeve as much as possible and do the exercises.
I have just been looking through a patient information sheet entitled Care of your Stitched Wound after your operation. Note that I said 'after your operation'. I think this should be given to a patient before you sign a consent form. The headings are Pain Relief, Bleeding, Stitches, Sport or Activity, Bathing, Pathology Result, Infection, Feedback.
Under Stitches I was surprised to read the following: "Even when the stitches have been removed, your wound is still very weak. Increased tension could cause the wound to open, so treat the area with care. It can take up to 12 months for the wound to regain its strength and flexibility." There is more under Stitches but that is the main point.
I do not feel happy that we are going to let patients diagnose themselves.
I have seen sleeves that can be bought privately on the internet and in the Lymphoedema magazine. Some of them look a bit clumsy and are expensive. I am happy with the ones that I have. Even these cost £40 for one to buy but they are supplied on the NHS. A patient is given two. They have to be washed daily and replaced every six months.
Thank you for reminding me where you are. What is your nearest town where you go shopping? You have said you are in a rural setting so I am trying to imagine where you are. Do you have neighbours close by and do you have any facilities and services?
You said you are going to the city with your sister-in-law. What city is that?
I live on a long avenue with a mixture of apartment blocks, houses and bungalows and there are lots of trees. There is a bus stop almost outside my apartment block where I can get a bus into Exmouth Town centre (5 minutes) or I can go the other way to Budleigh Salterton and further to Sidmouth. It is a short walk to get the bus to Exeter. I have a few local shops just up the road and bigger shops a bit further on. It is all very quiet and peaceful. I have a ten minute walk to the sea front.
I did know about the religious aspect of January 6th but I remember that in France there used to be a special family get together to eat a special cake which had a little token in it. There was a decorative paper crown on the flat cake. The person that got the piece of cake with the token in it won the crown. I think they do the same thing in Spain. In France January 6th was called La nuit des Rois (The night of the Kings). We do not do anything in this country but religious people might. The rest of us usually take down Christmas cards and decorations.
That is about all for now. Happy New Year and above all good health!
Love.
Sylvia xxxx
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Hello, everyone. I just want to wish all of you better health and happy experiences in the new year ahead and onwards. Here's to 2018!
Sylvia, thank you for your suggestion
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Hello everyone,
I have just received the latest issue of What Doctors Don't Tell You. This is the January edition and the first edition for 2018. I have read through it and there are some most interesting articles, which I am sure will interest you and I shall try to post some during the coming month.
I have just seen Australia welcoming in the New Year, but I do not know if I shall stay up until midnight here.
All the very best for 2018.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
I have just seen what is going on in Tehran and i just wanted to say that I hope all is fine with you and your family.
Here in the UK we are just two hours away from the New Year of 2018.
There is so much trouble everywhere and we urgently need to find peace.
Love.
Sylvia xxxx
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Hello Pam,
I have just read the information from the link you gave me some days ago – Kathy Mates on Living With Lymphoedema. "Academy – Award-Winning Actress Kathy Bates sits down with The Doctors to talk about an illness that affects 10 million Americans and hundreds of millions worldwide – lymphoedema."
I see this is dated February 20th 2015 and was by the Doctors Staff. I do hope other people in the group will have read this link.
The information is still valuable. I am lucky, so far, because I do not have any pain. I make sure I do the exercises and wear the compression sleeve when I am doing them. It is a bit problematic at the moment because of the surgery for the mole. I have to take off the dressing today and I am very nervous about it. On Friday I have to go to the GP surgery to get the stitches removed.
I am a bit fed up with all of this and want to get out of this hospital routine.
I do hope you have a good 2018.
Fond thoughts.
Sylvia xxxx
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Hello Everyone,
Thanks for all of the good wishes for 2018. I wish the same for everyone here, too. I hope that you will be as healthy as possible.
Kat, I always forget someone. Thanks for posting your pictures. It's good to see you, and to see you looking so well.
Sylvia, I'm about to disappear back into the world of work, but I'm glad you were able to get a look at the information from the link. Kathy Bates was also quoted this year in the Daily Mail about her lack of reconstruction:
'I don't have breasts, so why do I have to pretend like I do? That stuff isn't important.
'I'm just grateful to have been born at a time when the research made it possible for me to survive. I feel so incredibly lucky to be alive.'
I wear prostheses, but not always, and I agree. I admire her for being outspoken about all of this.
It's good that you don't have pain, and I understand about being nervous about removing the dressing. It's so difficult that you have more than one thing going on with your arm. You mentioned that you were able to resolve a minor occurrence of lymphedema in the past with exercise. I'd like to see that for you again. Even though the doctors have to test us, and scare us silly, I also hope that the mole turns out to be nothing, and that your peace of mind is restored soon.
Happy New Year,
Pam
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Hello everyone,
Out of curiosity, I was just looking back to the first page of this thread and it is strange how the names still sound familiar. I got to wondering what has happened to the people that posted on that first page on a newly created thread. If you are still around perhaps looking and living your life fully and normally, please pop in to say hello.
Hello to FreddieDLH, Spamy61, Karen3, Hymil, and jinglebell, all from the UK.
Fond memories.
Sylvia xxxx
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Wishing everyone a healthy and peaceful 2018. I enter this new year with a grateful heart that I am alive, am able to do most things I want to do and that I feel strong and healthy. Our lives have changed forever from having had cancer, but our lives are not over - may each of us approach each day with open hands to grasp LIFE, and embrace it with gratitude so that we can live each day to its fullest capacity - however, big or small that may be. We will still have many challenges, life is like that. Happy New Year to all.
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Sylvia, as I look back over the last year, I find myself thanking from my heart those who reached out in these forums. I was shocked and disappointed not to get the support I thought I would from family, except for one niece who keeps in touch regularly. Some family members and friends have rarely gotten in touch, if at all, and some friends have stepped forward and been there for me, and the people I have "met" here have become a family to me in a way my own family hasn't been. I am not angry; I know it is hard to deal with someone's cancer diagnosis, but I continue to be amazed at how many argued against my treatment choices, even when they didn't realize what they really meant, and weren't even aware at how far I had come in each step of the journey. So I look to this new year as another segment of the journey, and each day as another opportunity to give thanks for all that I have come through that will help to make to be a better person and a comfort to those who need it.
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Hello everyone,
I am busy re-reading parts of the book Let's Talk Lymphoedema – the essential guide to everything you need to know by Professor Peter Mortimer and Gemma Levine. I found this book extremely helpful, easy to understand and I am glad that I have read it and I intend to keep it as my main source of information about lymphoedema. I would recommend you read this book.
I am concentrating on chapter 4 – What causes lymphoedema and in that chapter more specifically lymphoedema related to current breast cancer treatment.
The following extract is an explanation by Professor Kefah Mokbel, a consultant breast surgeon.
"Current breast cancer treatment requires the surgical removal of lymph glands from the armpit in order to find out if the cancer has spread to them or not This can lead to lymphoedema in the arm, and the more lymph glands removed, the greater the risk'.
Years ago it was customary to remove most' if not all' of the lymph glands in the armpit as a curative treatment for breast cancer' Nowadays, that is reserved for women whose cancer has clearly spread to the glands there (which can be determined through clinical examination or ultrasound imaging of the glands) Most women will now go through a selective and accurate sampling of the regional lymph glands, called the sentinel lymph node biopsy.
The sentinel lymph node is the first lymph gland in the armpit to which cancer spreads. If the sentinel gland
is free of cancer then the other glands in the armpit down the line are likely to be as well, in which case there is no need to remove them. If significant numbers of cancer cells are found in the sentinel gland then standard practice is to remove all, or most, of the remaining lymph glands from the armpit or treat them with radiotherapy The scientific evidence clearly demonstrates that the more extensive the surgery in the armpit, the higher the risk of lymphoedema. However, radiotherapy is not without risk either.
Although the armpit is the main route for spread of breast cancer cells, the lymph glands above the collarbone can often be involved as well. These glands are not surgically sampled or removed but are usually treated with radiotherapy. Many of us remember the effects of super doses of radiotherapy that were used in the I980s in an attempt to cure breast cancer. Such was the severity of the long-term side effects, including arm lymphoedema, hat the issue was raised in Parliament. The patient advocacy group Radiation Action Group Exposure (RAGE) campaigned about it vigorously, which led to the problem being recognised and improvements in patient care.
However, until cancer treatment avoids lymph gland removal or radiotherapy, the risk of developing lymphoedema will always remain.
There was a time when chemotherapy was considered irrelevant for lymphoedema risk but not any more. Chemotherapy is used most often to reduce the chances of cancer recurring after surgery and radiotherapy. It can sometimes be used before surgery or radiotherapy to increase the chances of cure; or it can be used to treat cancer known to have spread to parts of the body outside the reach of surgery or radiotherapy. It appears likely that taxanes, a widely used chemotherapy agent, increase the lymph load by making blood vessels in the arm release more fluid. This can overwhelm a lymph system already weakened by lymph gland removal and so cause lymphoedema.
Lymphoedema in the arm is the most common form following breast cancer treatment, however, with the advent of minimalist surgery the problem of breast lymphoedema has emerged, although it has received much less attention. With a mastectomy, when the whole breast is removed, breast oedema is clearly not a problem. However, these days, where possible, standard treatment is a lumpectomy, or wide local excision, to conserve the breast for aesthetic reasons. This increases the chance of breast cancer returning, though, so radiotherapy is used on the breast as well.
Radiotherapy has an effect like sunburn and causes inflammation of the breast and overlying skin. Lymph flow through the skin is reduced, and that, combined with the removal of lymph glands in the area, causes fluid to build up in the breast. Sometimes the lymph vessels do not fully recover after the 'sunburn' effect of the radiotherapy has subsided, resulting in lymphoedema. Breast lymphoedema is uncomfortable at best, and painful at worst. It also makes the breast susceptible to cellulitis, and it leads to a lopsided cosmetic effect, which may be difficult to hide under clothing if the swelling is severe. The good news is that if infection can be prevented and treatment pursued, the breast lymphoedema can eventually resolve."
Best wishes.
Sylvia
I should add that in this chapter it says that not many people know what lymphoedema is but that those that do know about it believe that cancer is the main cause. It needs to be pointed out that it is the treatment of cancer that causes lymphoedema and NOT the cancer itself.
This chapter also covers the other causes of lymphoedema.
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Hello adagio and Nancy,
Thank you for your posts, which I found most interesting and deeply moving. I shall try to reply later on.
To Mary, thank you for your PM. It just goes to show that the "experts" are not always right. I look forward to seeing you back on the thread.
I am waiting for Friday afternoon to get the stitches removed from my arm. Thank you for all the support you give on the thread.
We are experiencing another storm here today, storm Eleanor. The wind is so noisy.
Best wishes.
Sylvia xxxx
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Sylvia and anyone else interested,
This is somewhat of an echo of what you have written above. Things I had not heard before.
This is another article of clinical trial results that I found very interesting, this time on lymphedema.
They note that in their results it seems that lymphedema is not only a result of the lymph node surgery, but also is more prevalent in people who have had chemotherapy, especially the taxanes (as your post above suggests). I had not heard that before, also that radiation is an aggravator. It's funny we both have found the same things at the same time.
I'll be back later, Mary
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Sylvia,
The article about the study I put up in the above post also seemed to find that the farther we survive past diagnosis and treatment of BC, the more chance there is of getting lymphedema. Hardly seems fair, right?
I live about 25 miles from a city of about 50,000 where I go to for doctor appointments, grocery stores, hardware stores, clothing stores, restaurants etc. There are a couple of very small towns closer that have groceries, but they have very limited stock. Just the staples, and the fresh produce is usually not very fresh. There are small restaurant/bars in these small towns too and convenience stores to gas up the car. Also stores with all kinds of farming supplies since farming is the thing around here.
I have neighbors, in the winter when the trees have no leaves I can see their houses but they are not too close for comfort. I live on a paved county road, which is nice because there is not dust stirred up constantly. There are also many gravel roads around, I try to take my truck when I travel those.
The town where you live sounds very nice, peaceful and probably quiet now because not too many people there for the ocean and beach. It's great that your shops are close and have good selections. I do remember you said your beach is not like white sand beaches. I have read enough English novels to know that beaches there are often rocky and are sometimes called "shingle", is that right? One of my favorite novels that I first read early in life is "Rebecca", by Daphne du Maurier, in which the great part of the story takes place near and on the rocky coast.
The January 6th French observance seems to be derived from the 3 Wise Men, the Magi, or Kings of their distant countries who traveled afar to see the baby in the Manger, thus "The Night of the Kings" Next Sunday in church we will sing "We 3 Kings".
We 3 Kings of Orient are,
Bearing gifts we travel so far.
Field and fountain, moor and mountain
Following yonder Star.
Oh, Star of Wonder, Star of Might
Star of Royal beauty bright
Westward leading, still proceeding
Guide us to thy perfect Light.
It is strange that so many religious holidays are derived from pagan holidays of old, and many secular observances are derived from old religious observances. I suppose if Henry VIII had not split from the Catholic church because of Anne Boleyn we would still celebrate religious holidays in a more similar way.
Have to close for now, talk again soon, love
Mary
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Hello adagio,
Thank you for your post of January 1st. I was glad to know that you are starting the New Year with a strong and positive mind. I am sure your message will inspire and motivate us all.
Love.
Sylvia xxxx
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- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
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- 591 Pain
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- 109 Welcome to Breastcancer.org
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