Calling all triple negative breast cancer patients in the UK
Comments
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Hello margarett,
I just wanted to say that I hope you had good news today and that I shall be thinking of you on December 23 as you begin chemotherapy. Concentrate on that and do not worry too much about anything else.
Best Wishes,
Sylvia.
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Hello BernieEllen
I was sorry to read that this year you have had two cousins and three friends all die of heart attacks and brain haemorrhages and that they were all under 45. Did they have chronic health problems before this happened? There seems to be so much illness around in the UK. I read that there are 175,000 cases of diabetes each year. Many of these could be prevented by healthy eating.I hope all is well with you. Here in Exmouth I can feel all the hysteria over Christmas building up!
Best wishes
Sylvia0 -
Hello everyone
I have been doing a lot of reading about osteoporosis as an after-effect of breast cancer treatment, especially chemotherapy. Are any of you suffering from osteoporosis? I have just read about chia seeds, which are high in calcium and other healthy vitamins and minerals. They are supposed to be superior to flaxseed. I was wondering if any of you are using them?Best wishes
Sylvia0 -
Hello margarett
I hope all is going well with your chemotherapy today. I forgot to mention that when I was going through mine a blood test was always taken the day before I was due to go to the hospital for my chemotherapy. This is done so that the test results can be studied to decide whether a patient is fit enough to proceed with treatment. They look at red and white blood cell counts in particular. Before chemotherapy I also had an interview with chemotherapy staff and a health assessment made. Usually and ECG is done before treatment and sometimes during treatment. The chemotherapy drugs are not made up at the pharmacy until a patient arrives and has been given the go-ahead.The intravenous treatment takes quite a long time, so it is a good idea to take something to read if you feel you can. Be prepared to spend quite a lot of time at the hospital during each treatment.
Hoping to hear from you.
Best wishes
Sylvia0 -
Hello to all newly-diagnosed patients
In order to go through your treatment calmly and with optimism, I feel that it is not a good idea to fill your heads with too much information, as you do not want to be frightened or anxious. Of course, this is just my own opinion, but I feel that perhaps the internet is overwhelming us with information. Just listen to your medical team. They will give you information in a simplified manner. Do not be afraid to ask questions. All you need to know at first is what kind of breast cancer you have and what the treatment plan is. Meet your medical team halfway by looking after yourself, getting plenty of rest and trying to be relaxed.You should be told before starting chemotherapy to get any dental work done beforehand, to have any flu injections and also one for pneumonia. That is what I was advised. You cannot have dental treatment during chemotherapy treatment. Because chemotherapy drugs will suppress your immune system, you will be advised to avoid crowded places, such as shopping malls and public transport. You will be advised to stay away from anyone who is likely to pass on an infection to you.
I choose to have the district nurse come to my hope the day before my chemotherapy, rather than go to the surgery and pick up possible infections. I did everything to help myself and went through chemotherapy with very few problems.
I hope this will help you. Best wishes.
Sylvia0 -
Hello everyone
I am posting just a few snippets of information that I found in the press this week.The first one is about a woman who had a mastectomy and then had a robot assisted breast reconstruction after the surgery and how this pioneering technique restored her confidence. I think you will find the whole article very interesting. It starts with her diagnosis of breast cancer five years ago and goes through all the details of her trails and tribulations up to the pioneering reconstruction. The link is:
The woman concerned was the first in the UK to undergo this robot assisted reconstruction.
I found out from this article that more than 18,000 women have a mastectomy every year in England alone.
I think this article will be of interest to those of you thinking of having reconstruction.
Another article that I found of particular interest, again under the Good Health section, was an article about a man who could not deal with his wife's breast cancer. The article is entitled The Men Who Walk Out When Their Wives Become Ill. I know someone was going through this on one of the threads. It is a truly interesting article and will give you insight into what your husband or loved ones may be going through as you go through cancer treatment. The link is:
http://www.dailymail.co.uk/health/article-2076273/The-men-walk-wives-ill.html
There is also a counselling link: www.counselling-directory.org.uk
Finally, a little snippet I found in the Daily Express under Your Health under the section Dr Rosemary Leonard, Getting to the Heart of Medical Matters. The link is:
http://www.express.co.uk/ourcomments/view/290900/Dr-Rosemary-Leonard
This is a very interesting section, in which people can send in health questions. The one I noticed was about neutropenia and what it is. It will be of particular interest to those women undergoing chemotherapy.
Neutrophils are a type of white blood cell and make up between 50 and 75% of the total white cell count. They are an important part of the body's immune system and attack bugs that enter the body, particularly bacteria. Low neutophil count, called neutropenia, can be genetic. In this case the count is not particularly low and does not appear to affect the immune system.
More severe neutropenia can also be caused by chemotherapy drugs. This is why patients having cancer treatment need regular blood tests to keep a check on these.
I hope you will find this information useful.
I think reconstruction will be of particular interest to christina1961 and bak94, whom I believe are thinking of reconstruction later on. I cannot remember if mccrimmon324 is thinking of reconstruction.
I imagine all of you are busy Christmas shopping - only three more days to go!!!
Best wishes
Sylvia0 -
Hello sam52
Thank you for your pm and thank you for the information about the Prolia did you take it? thread. I found it interesting but there seems to be a quarrel going on! On these threads we have to keep everything in perspective and post our own personal experiences and information. Judging by the threads, damage to the bones appears to be quite a major problem after breast cancer treatment. I find that my breast cancer experience is at the back of my mind most of the time, but I am concerned about osteoporosis that I have developed since treatment, and periodontal problems that have worsened since treatment.
Best wishes
Sylvia
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Hi Sylvia, my cousin and two of my friends, never drank or smoked. All were in to keeping fit and healthy. One was a vegetarian. Who knows.
I am very traditional at Christmas. My sisters birthday is on the 22 dec and my brother's is jan 4th. There wasn't much money when we were growing up. We were brought up old catholic Irish ( I was chaperoned until i was 18). We always celebrated Christmas as Jesus' birthday. I continue that in my parents memory
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Hello BernieEllen
Thank you for your post.It is so sad that people who take care of themselves can die prematurely. As you say, who knows what the reason is. In fact, there does not seem to be any reason. I feel that it is the same with breast cancer. I know the experts give us all the risk factors etc. but when it comes down to it, it seems to be the luck of the draw. Everyone I know considered me to be the least likely person to end up with breast cancer, but I did. As you say, we have to get on with our lives and enjoy every day.
I was interested to know a little about your life. It looks as though you will be doing a lot of celebrating during the next couple of weeks. Your brother's birthday on January 4th is the same date as my husband, Raymond's, and my deceased older brother, Ken, was on December 20th. Like you, I come from modest roots.
I was very interested to know about your old catholic Irish upbringing and about your being chaperoned until you were 18. How do you feel about that now? I think that children need a lot of guidance and discipline. I think they crave it and I think that there is not enough of it these days.
At least you celebrate the true meaning of Christmas. It is, after all, supposed to be about the birth of Jesus and not all the commercialism that it is today.
I hope you will have an enjoyable traditional Christmas and that you will put breast cancer away in that draw which I mentioned in earlier posts.
All the very best.
Sylvia0 -
Hello suze,
I hope you have a good Christmas and a lovely trip. I think you are right to put cancer away in a drawer and enjoy life away from it all.
Best wishes,Susan.
Sylvia.
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Hello mccrimmon324, I just wanted to say that I like your photograph. All the best for Christmas and the New Year.
Best wishes,
Sylvia
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bak 94,
If I were you I would enjoy the festive holidays and forget about cancer for a while. Get through radiotherapy first and then think about what you want to do about the3% estrogen.
Best wishes,
Sylvia.
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christina 1961,
Have a good Christmas and forget breast cancer. Rest and get ready for the next round of eribulin
Best wishes'
Sylvia.
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Hello to everyone.
Sylvia, unfortunately I am a lapsed catholic, however, my spirituality and faith are of deep meaning to me.
When my parents moved to England in the forties they did not move to an Irish area mainly because of the drinking culture associated with the Irish. My grandfather on my fathers side was an alcoholic and died at the age of 52 when my grandmother was seven months pregnant. She subsequently died in childbirth at the age of 36, with her fourth child, having borne my father at the age of 14.
The history of her family dates back to the famine years when during the evictions her ancestors were forced off their land and the men killed. They took refuge on the mountain near me and lived in a cave. The mountain is called Sliabh na mban - Mountain of the women.
My father was a landscape gardener and had a deep affinity with the earth and nature. He spent every summer of his childhood staying with his grandmother on the mountain. He was a very peaceful man.
All through my history the women were the strongest and my mother had a deep affinity for her homeland, it's ways and customs. Eventhough she was always grateful to England and the opportunities given there her soul was always in Ireland, so we were raised they way she had been.
There is never a day goes by when i do not think of my parents and my upbringing. I am not materialistic nor are any members of my immediate family. My parents had nothing but shared everything. Our house was always open. When i think of them, I think of this -
Charles Dickens, A Christmas Carol
But I am sure that I have always thought of Christmas time, when it has come round... as a good time; a kind, forgiving, charitable, pleasant time; the only time I know of, in the long calendar of the year, when men and women seem by one consent to open their shut-up hearts freely.
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I wish you all a safe, peaceful and Happy Christmas.
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Bernie Ellen,
That was a beautiful post. I hope you have a wonderful Christmas. My ancestors on my father's side were from Scotland and came to the states around 1689. I also have some Native American background and my greatgrandmother was a "mountain woman." We believe but cannot yet confirm that she was 1/2 Cherokee. During the 1920s, folks came to her for herbal remedies. That side of my family was very attuned to nature and I grew up listening to frog and bird call records with my father - and hiking in the local mountains.
Sylvia,
Thank you - that is very good advice! Forget about breast cancer for now and enjoy the coming days!
Wishing everyone a wonderful Christmas and holidays!
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Sylvia-Thank you! I have been busy with holiday shopping and baking. Pretty tired. Good news is I got one drain out yesterday and the other one out today, 3 weeks with those things! I am interested in reading about the reconstruction when I have more time. After the bmx and knowing I need to have a hysterectomy I am really on the fence about doing yet another surgery, even though I said I was 99.9% sure I woould do reconstruction before I had the bmx. I am probably at 50/50 now! I hope you enjoy the holiday season and please know I am forever grateful for all the information and well wishes you provide us with!
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May God give you...For every storm a rainbow, for every tear a smile, for every care a promise and a blessing in each trial. For every problem life sends, a faithful friend to share, for every sigh a sweet song and an answer for each prayer."
There's more, much more, to Christmas than candlelight and cheer; it's the spirit of sweet friendship that brightens all the year. It is thoughtfulness and kindness, it is hope reborn again, for peace, for understanding and goodwill to all women!
Wishing you all a safe and happy Christmas
Lots of love0 -
That was very beautifull Bernie.
Slyvia and all the ladies on this thread, I hope you all have a very Merry Christmas and a very Healthy Happy New Year. And I want to thank all of you, this past year was a terrible and extremely scary time for me but I was able to get thru it with the support from all of you. Thank you.
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Hello BernieEllen
Thank you for your most interesting and profound posts. I was so interested in what you had to say about your family history. I was interested to know that your parents had moved from Ireland to England in the forties. What a lot of tragedy in your family with your paternal grandparents dying so prematurely, especially your grandmother and leaving her four children orphaned.I have always been interested in history and was really interested to hear you mention those terrible famine years and how your family lost their land and the men were killed. Your father sounds as though he was a good man and in tune with nature and I think you have that in your genes.
It is such a pity that mankind does not seem to learn from history and although there is a lot of goodness in the world, man's inhumanity to man continues. There is such awful news around the world every day.
I can understand what you say about strong women in your family. I think that women are very strong. I can understand how your mother would keep a deep affinity with her homeland, even though she was living in England. Because I have lived abroad for a large chunk of my life, I do understand how your roots and homeland always pull at the strings of your heart and other countries never feel like home despite the opportunities. I have very realistic attitudes about England, my country of birth, and I have a lot that I feel ashamed of about it. I am not proud of our Empire past and our liking for war. England has done a lot of wrong in the world, and I mean England, which even today has an arrogant attitude towards Scotland and Wales.
I can understand how your parents and your upbringing are always in your mind.
Did your parents ever return to live in Ireland?
It is good to know that you and your immediate family are not materialistic, as the western world is sick with materialism and consumerism. It would be good if some of the goodness and charitable feelings of this time of year could remain with us all through the year.
I really feel that I have got to know you this past year and feel that you are continuing your family history of strong women.
Enjoy your time with your family.
Best wishes
Sylvia0 -
Hello christina1961
I just wanted to say how interesting I found the information about your family roots. I was interested to know that, on your father's side you have Scottish roots that go back to 1689, and that you also have some Native American roots, possibly Cherokee. Have any of your great grandmother's herbal remedies been passed along with the family? I am very interested in herbs and their healing powers. It sounds as though you were very close to your father.Enjoy the festive holidays and look forward to a good 2012. Rest assured that we shall all support you here as you continue on your journey through treatment.
Best wishes
Sylvia0 -
Hello bak94
Thank you for your post. What have you been baking for Christmas? I do not know if much baking goes on at Christmas in this country any more, but the traditional mince pies, Christmas cake and Christmas pudding are bought in abundance.You are bound to still feel pretty tired as it is still so soon after treatment. I was glad to know that, by today, you will have two drains out. It must have been exhausting to have them in for three weeks.
Your next challenge is radiotherapy. Give yourself plenty of time to think about reconstruction and get every piece of information that you can. In time, make sure you read about that robotic procedure, as I am sure you will find it interesting. There is a lot of bad news in this country at the moment about faulty silicone implants that have leaked and caused problems in France, this country and in fact around the world. The company is a French one and used industrial grade silicone in their implants. There is cause for concern about the cancer risk from these faulty implants. The French government is offering the 30,000 French women affected surgery to remove the implants, but in this country, where 45,000 women are affected, the government is saying the surgery is not necessary!!!
As you know from previous posts of mine, I would never have contemplated reconstruction surgery, but I can understand how younger women might feel they need it.
I am so sorry that you have to go through a hysterectomy, as that is another major surgery, and I understand from friends that it takes quite a time to recover from it. Are you having this because of being BRCA1+?
Again, rest assured that, as with christina1961, we shall continue to support you on your journey.
We all admire you on this thread and I feel that you have been very courageous this year as you have gone through this journey for the second time.
Concentrate now on enjoying Christmas with your loved ones.
Best wishes
Sylvia.0 -
Hello BernieEllen again
Thank you so much for posting those wonderful words. I am sure that we all appreciate them and that the words will help all of us through this journey that is life and that has so many challenges to throw at us.You are certainly an inspiration to me, BernieEllen. Peace be with you this Christmas.
With much affection
Sylvia0 -
Hello mccrimmon324 (Heather)
Thank you for your post. Thank you for your kind words to all of us. I am so glad to know that we have been able to help and support you on this thread. I know that this has been a difficult and frightening time for you, but you have come through it and you have done very well. I hope that we shall all continue to support and help one another through the New Year. I do hope that 2012 will be a good one for you. What plans do you have for 2012?Enjoy your Christmas, whatever you may be doing.
Best wishes
Sylvia0 -
Hello Maria_Malta
I hope all is well with you. I suppose you have been busy with Christmas preparations. How is that Christmas menu going?I thought of you this week when I read a newspaper article about the goodness, once again, of the Mediterranean diet. Apparently, it is very good for longevity. This was a suggested daily diet:
Daily taste of sunshine to boost our life span.
Breakfast: Yoghurt with a bowl of muesli and a dash of honey.
Lunch: Greek salad with feta cheese, olives, tomatoes, cucumber, lettuce and celery, with an olive oil and/or lemon juice dressing.
Afternoon snack: Pitta bread, with a hummus dip or a handful of unsalted nuts.
Dinner: Seared tuna steak with green salad, boiled new potatoes, fennel and green beans.
Dessert: Fresh fruit.
Have a nice Christmas, Maria and we shall all be thinking of you after Christmas as you finish radiotherapy.
Best wishes
Sylvia0 -
Dear Sylvia and all the great women who write here...thanks for your posts, support, humour and advice. We have all been going through tough times but I hope for this week at least we are all painfree, have few side effects for whatever nasty treatments we might be having and that 2012 will be much better for all of us.
BernieEllen thanks for your lovely words...I was really moved. Although a tiny dot in the Med is very different to Ireland or the UK, we are similar in that we both had Catholic upbringings. I too am a lapsed Catholic, but still celebrate Christmas and Easter the traditional way in memory of my parents and out of respect for my neighbours and the local community. As you so rightly say it is a time for openness and kindness and for giving and sharing.
Meanwhile I am preparing Christmas lunch, in this case NOT a Mediterranean meal, Sylvia. MY sister is making a baked pasta dish to start (canneloni). We also have turkey here, so turkey it is..but some very 'anti-cancer' veg...red cabbage and broccoli and sweet potatoes. Xmas pudding and for those who don't like it, ie my kids and neices, lemon meringue pie. (not for me.) With great restraint I did NOT make a Xmas cake this year (I'm the one at home who likes it most), nor did I make mince pies, but I must confess to eating 2 totally DELCIOUS ones yesterday at a friend's house...As you see my Catholic upbringing emerges in my need to confess!!!
Love and best wishes to all of you and a healthy and peaceful 2012
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Hello Maria_Malta
Thank you for your post. It was as interesting as always. Like you, I hope that everybody will have a good week, feel pain free and optimistic. Let us hope that 2012 will be good for all of us.I agree with you, Maria, that Bernie's words were really moving. I am proud of the depths of thought that we can go to on this thread. All of us really think about everything we say. It is interesting that you and Bernie had Catholic upbringings, but are now lapsed. I am not at all religious, but try to be good and decent in everything that I do. I think there are a lot of people that celebrate religious festivals in their own way. It is not only Christmas that is being celebrated but also the winter solstice. We all need ways of cheering ourselves up during the long autumn and winter months. Easter also celebrates the rebirth of spring.
Thank you for letting us know about your Christmas meal. That canneloni baked pasta dish sounds interesting. Turkey meat is supposed to be one of the healthiest meats and, of course, your choice of vegetables could not be better. With the traditional Christmas meal I think the trouble comes more with the desserts, as our old enemy sugar rears its head. I used to love Christmas cake, Christmas pudding and mince pies and, way back when, used to make my own. I have not really bothered about them for some time. I am glad you enjoyed your friend's delicious mince pies and had to laugh at your confession of enjoying them.
Have a good Christmas day with your family.
Wishing you all the very best for 2012. Together on this thread we can face all the challenges that life throws at us. As the three musketeers said, one for all and all for one!
With affection
Sylvia0 -
Hello BernieEllen
I forgot to say that a Christmas Carol by Charles Dickens is one of my favourite books. I love the works of Charles Dickens, especially Oliver Twist, Great Expectations, David Copperfield, Nicholas Nickleby, A tale of Two Cities and the Pickwick Papers. I also really like Our Mutual Friend with the theme of money running through it. It is a truly interesting novel. I think that Dickens like Shakespeare tackles every facet of the human condition. There is a new dramatisation of Great Expectations on the television during the Christmas period, as well as a new film version opening at the cinema.All the best
Sylvia0 -
Sylvia, I admire that you have overcome desire for desserts, sweets, etc. - I am still working on that and seem to have a hard time with it.
I just wanted to wish everyone a very happy holiday and New Year!!
Love, Christina
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Thank you, Sylvia, for your post and also for all the support from everyone on this thread. I saw my breast surgeon Friday and once again had an outpouring of tears at the worst time. It seems I never cry unless I am somewhere that isn't private! I think I started crying in his waiting room because he is the most empathetic of my doctors. The 10 months of treatment has taken me to the edges of my endurance but it will be worth it if it works. Part of what is so difficult is that I have to be somewhat sequestered as my white cells get low so I am often alone.
In regard to my family history, no family herbal remedies were passed down, possibly because they were passed down to the women rather than the men in the family. Many of the stories about my paternal great grandmother were told to me by my great aunt whom I met when I was 17. I taped many of her family stories during that time.
I am resting today after an outing to the grocery store. "Secret Santa" (I suspect this is my sister) had a gift of a wonderful, large slow cooker delivered to my office last week! I have great plans for vegetable soup on Monday. I make a base using vegetable broth, tomato paste, Goya tomato paste, and herbs, then add celery, onion, potatoes, carrots, beans, and other vegetables.
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