Calling all triple negative breast cancer patients in the UK
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Hello Sylvia,
Pleased to see that I'm not the only one with a pay as you go. I look around me and see far too many people who are completely beholden to their phones, it must be so stressful.
I do hope that you and Raymond enjoyed a peaceful Christmas free of any emergencies in the housing complex. Winter is probably your peak time, particularly when the weather turns cold very quickly.
Michael and I had a lovely Christmas with friends in the village. Far more kindness in the world than otherwise. The Press seem determined to emphasise only the bad, as if it's sole aim is to keep us all in a perpetual state of anxiety, rather than to keep us informed.
I'm off to have my PICC line flushed soon, fingers crossed that it's still working.
I'll catch up with everyone later. Helen's right, this is a very busy thread.
Keep well wrapped up in this cold weather.
Love
Gill X
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hi Rosiecat, it is amazing to me that you are all freezing and we here in Australia are dealing with excessive heat. Today 40 where I live but some are suffering days of 49 degrees Celsius. Mind you I do remember in days gone a week of 40 plus was what summer was about!
You guys stay warm!!!
And good luck with your PICC line.
Best wishes xx
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Hello Mary,
It was nice to hear from you. It sounds as though you had a busy but enjoyable Christmas.
I often think it is hopeless trying to steer people away from sugar. It is in the shops all through the year and every special festival or occasion is an excuse for stacks of chocolates, cakes and biscuits.
I agree with you that putting taxes on items with sugar or salt will not work. I think the number of junk foods and processed foods is getting worse and worse and that three-quarters of the food in the supermarkets is what I would class as non-foods. I bypass most of the aisles in my local supermarket. I shop as if I were shopping in small shops, just like my mother used to do. I tend to think that, if you have to read the label the item will probably not do you any good!
It sounds as though you are still very busy, but make sure you do not overdo things.
Yesterday I was doing my usual routine on the forum. I tend to have a quick look at Calling all TNs and I noticed that Debra, InspiredbyDolce, had posted to say that she had reached her seven years since diagnosis. I posted my congratulations. I am sure you will remember her as she posted quite a lot.
I also did my reading of the section entitled Active Topics. It gives four pages of posts around the forum that are the most recent. It is good for picking up bits of information. I read something there about calcium deposits or calcifications and that invasive ductal carcinoma breast cancer feeds on them. I think I understood it correctly.
I do think the section All Topics should be looked at by all newly-diagnosed patients when they join bc.org. It gives a clear picture of all the topics on the forum and you just have to run through them. I think it probably makes the threads easier to navigate.
I definitely agree with you that there is too much choice in the shops. The trouble is there is too much choice of rubbish! We are suffering from over production and I am always wondering how much in the way of resources we have wasted to produce them.
That is about all for now.
Love.
Sylvia xxxx
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Hello viewfinder and Susie,
Susie, I was glad to know that you enjoyed your Christmas trip to Norfolk. What are you planning now that you are back in London?
Viewfinder, did you have a nice Christmas? Do you have any plans for the New Year?
Love to both of you.
Sylvia xxxx
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Hello Helen,
It is always nice to hear from you. I do understand that it is quite difficult to keep up with all the posts and it is good to look elsewhere to see what is going on and whether there is any information that is useful to you.
I hope you had a good Christmas. It must have been nice to have your first Christmas in your new home.
Thank you for keeping us informed about your treatment. I do hope you have good news with your bloods after your two-weeks break and that the next round will be the final one.
It was good to know that the side effects from Xeloda have been minimal for you.
I can understand what you mean by saying that your cancer diagnosis has changed you a bit. I think it affects us all. For me, I do not like wasting time and putting things off. I want to fill my day with things I have to do. I believe firmly in the saying "Never put off until tomorrow what you can do today".
Thank you for your good wishes to everyone on the thread.
I do not envy you your heat at the moment. I found it difficult to cope when had our summer drought and it was not nearly as hot as you are having. Your heat reminds me of the 45 degrees heat that I experienced during my three years of teaching in the south of Morocco.
Wishing you a happy, healthy New Year.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your post. Raymond and I did have a quiet, peaceful Christmas and there were no emergencies in the apartment complex where we live.
I do agree with you that the press does not really inform us. It tries to brainwash us and is really interested in only in sensational bad news. It certainly does keep us in a constant state of anxiety.
Often the news is left hanging as the press moves on to the next sensational headline. I would like to know where the supposed Russian spy and his daughter have gone. His very elderly mother was interviewed and was so upset that he had not phoned her for a long time. The atrocious murder of the journalist Kashoggi has just been left. I wonder, too, what has happened to the young Christian woman in Pakistan. No Western country wanted to take her. What is happening to the British-Iranian woman stuck in jail in Iran? When-oh-when will Theresa May do the right thing and let Parliament finish that meaningful debate that she postponed? I think she is in contempt of Parliament and that the MPs should all come back on January 2nd finish the debate and vote. Everything just goes on and on and nothing useful gets done.
I was glad to know that you and Michael had a good Christmas.
I do hope everything goes well with your PICC line flushing.
That is about all for today.
Wishing you a happy, healthy New Year.
Love.
Sylvia xxxx
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Hello Sylvia,
2019 will, hopefully, unfold as normal, with theatre, cinema, exhibitions etc. Today went to see The Edwardian Circus at the Royal Festival Hall with my nephew and his partner and their 3-year-old. I thought this was terrific. The puppet elephants were so convincing but I liked the acrobats and jugglers best.
Also a lovely production of Fiddler on the Roof at the Menier Theatre last Saturday.
Susie
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Hello Viewfinder,
Hope your Christmas was peaceful.
Thank you for the clarification regarding the left-hand to right-hand changeover. I googled the ensuring chaos and the horrendous cost of the project. The Swedes must have had the patience of Job.
Wishing you and your family a much happier and healthier New Year. I know everyone on the thread will be thinking of your sister.
Gill X
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Hi Helen,
Even an English Summer is too hot for me most years, I wouldn't know what to do with myself if the temperature was over 40! My brother-in-law and his family live in Canberra and I always find it strange that they have a picnic Christmas Dinner outdoors while we have the full on traditional Turkey dinner wearing thick knitted jumpers and getting as close to the wood burner as possible.Though most civilised people in the UK do have central heating and are probably a lot warmer than us.
The PICC line is now back in full working order after the tantrum it threw last week.
Wishing you a Happy New Year and sending positive thoughts your way for a healthier New Year too!
Gill X
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Gill,
You do remind me of my life growing up in a big, old farmhouse. The only heat in the house was in the kitchen and was the stove my mother cooked on. In the morning it was a mad dash from icy bedrooms to the kitchen so we could get somewhat dressed near a fire. There was a small heating stove in my parents' bedroom, but I never remember it being lit; they were too much into conserving firewood for that luxury! We would get much colder temps than you have, often -18C and below. I would not like to live that way now, unless I had a healthy husband to gather wood and had more than one stove!
Unbelievable, it is a cold morning here and I haven't fed my birds yet, the cardinals are actually banging on the window in front of me and hanging on the screen; they know I am sitting here and ignoring them! Off I go, must keep everyone happy!
Mary
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Hi, Helen
Nice to hear from you down under! Sorry it's so hot there, here it is -3 C this morning. Our weather has been up and down all winter, we were at 15C a few days ago. Not good for my poor old sinuses. They like consistency, of one sort or another.
I'm glad to hear you are almost finished with treatment, glad the Xeloda wasn't too bad. The end of treatment is a strange time. I know I felt that while I was undergoing treatment, I was actively battling cancer, and when it was over I felt as if I was still in a battle but disarmed. At the same time I was very relieved to not have the drugs going in my body. Then I began to realize slowly this was my life now, for however long, and I had better live it as well as possible in my rather battered body. I try not to get stressed over things, and also to take advantage of opportunities to do things with friends and family. If I want to travel, and can swing it, I go and see new places. I now try very hard not to get emotionally over-stressed, but still do once in a while and it's very unpleasant, I am very aware now of what it does to one physically as well as mentally.
Yes, good health and good fortune do seem to be one and the same to all of us here, I'm sure. I also wish that for all of us in 2019! Take care, Helen, hope to talk to you again soon.
Later, love, Mary
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Hi, Sylvia
Sugary treats are everywhere, and at all times. Hard to miss! Now we will be approaching Valentine's Day, so the candies wrapped in green and red will be put all in red and formed into hearts. Funny how pagan festivals become Saint's Days, and those days become only the means to sell little bits of chocolate!
Grocery shopping is to be done around the outer perimeters of the grocery stores, I do venture into the aisles for olive oil, coffee, spices and popcorn. One of my vices is my afternoon salty tooth, it seems every afternoon about 3 PM I really want something salty. I keep a bag of organic, air-popped popcorn handy and snack on that. I don't buy bags of unpopped popcorn because I don't eat it fast enough, it is usually past its' prime long before it's gone.
I will look up Debra (inspired by dolce), I remember her too.
I do venture into other places on this site too, I have posted in several. About neuropathy, and managing life after cancer treatment, and a few others.
The work on my farmhouse is finally starting to look like something good, he has tiled the bathroom and it's beautiful. Could I have opinions please on the following question: do you think the ceiling in a shower should be tiled? Right now he has tiled the shower walls, the floor but not the ceiling. In his opinion it's not necessary. In this house I have 2 showers and they are both tiled on ceiling, as well as walls. Would having bare ceilings with only fiberboard tiles be asking for trouble inside a shower?
Closing for now, I have one more Christmas today, and hope it will start early and be done early. Then on to 2019, which I hope brings health, happiness and serenity to all of us!
Talk soon, love, Mary
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Hi, Helen
Nice to hear from you down under! Sorry it's so hot there, here it is -3 C this morning. Our weather has been up and down all winter, we were at 15C a few days ago. Not good for my poor old sinuses. They like consistency, of one sort or another.
I'm glad to hear you are almost finished with treatment, glad the Xeloda wasn't too bad. The end of treatment is a strange time. I know I felt that while I was undergoing treatment, I was actively battling cancer, and when it was over I felt as if I was still in a battle but disarmed. At the same time I was very relieved to not have the drugs going in my body. Then I began to realize slowly this was my life now, for however long, and I had better live it as well as possible in my rather battered body. I try not to get stressed over things, and also to take advantage of opportunities to do things with friends and family. If I want to travel, and can swing it, I go and see new places. I now try very hard not to get emotionally over-stressed, but still do once in a while and it's very unpleasant, I am very aware now of what it does to one physically as well as mentally.
Yes, good health and good fortune do seem to be one and the same to all of us here, I'm sure. I also wish that for all of us in 2019! Take care, Helen, hope to talk to you again soon.
Later, love, Mary
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Hi, Gill
Although tripe in chili sauce was very tasty to me, tripe in hot milk and onions sounds very odd, but I'll take your word that it was good. Seeing the blood sausage made is what turned me off as a child and persists to this day; walking into the kitchen and seeing the buckets of blood sitting on the floor as my aunts bustled around cleaning sausage casings while getting ready to prepare it was too much. They made another sausage with ground-up liver and other organs, didn't like it either. The only one I did like was the sausage made from scraps of meat too small to be anything else. The haggis sounds rather like the liver sausage, I would try it, can't promise I would like it!
Susie must tell us about jellied eels, I suppose. It doesn't sound like something I would rush off to try.
Something we all liked after a butchering was the brain of the animal. If you went in certain restaurants you could get a brain sandwich. Beef brains were better than pork brains, I thought. Now I think the selling and eating of brains is illegal because of the mad cow disease, and also very oddly, one of my brothers died of CJD at age 61. It is a horrid and very rare disease, and is related to the mad cow, although he had a form which is called sporadic, which means the docs have no idea why he got it. The only good thing about CJD is that it kills one quite quickly, but it is always fatal. That was a dreadful time.
I hope your PICC line got flushed allright, I wonder why they make such a big deal of it. When my husband had his, it was a matter of flushing the lines before and after each use. That consisted of putting in a syringe of saline before running the IV, after running the IV another syringe of saline and that would be followed by a syringe of heparin. Heparin keeps the blood from congealing in the line, I think. They gave me boxes of the stuff, and we kept up with it.
I hope you are feeling better after having a nice Christmas, and will be strong and ready for next time! Here's hoping we all have a great 2019!
Talk to you soon, love,
Mary
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Haha, just got acquainted with a lot more people here on the boards, all the posts I posted this morning accidentally went on Calling All TNs because I was there looking for Debra. Got them all transferred here, but can't seem to delete them without deleting them here, I guess. Oopsie!
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Hello Susie,
Thank you for your latest post. That Edwardian Circus you saw sounds very entertaining. You are certainly lucky to have all that cultural entertainment so close at hand. It is sadly lacking here in Devon. There is the Northcott Theatre in the grounds of Exeter University but we do not go there much any more.
I think I am going to watch a six part drama of Les Miserables on BBC1 tomorrow evening. I did love reading the book very many years ago in French.
What are you going to do for New Year's Eve?
Wishing you a very Happy New Year.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post.
I am sure that when I go to the local supermarket next week they will be stacking up an aisle for Valentine's Day.
I shop in the supermarket as though I were going to individual shops. I start off with the fruit and veg section, and that is a great part of my shopping. I try to buy either local produce or organic when I can. I sometimes look at the bakery but only buy small artisan loaves that I slice at home. I buy rye, seeded wholemeal, ancient grains and sometimes olive bread.
I go to the wholefood section where I buy raw nuts, seeds and prunes.
Like you, I buy extra virgin olive oil and also avocado oil. I have used avocado oil on my face for over 40 years. I usually put some on my face and wash it in with water. I think avocado oil is the only oil that mixes with water.
I buy tea sometimes, but most of it I buy at the little natural food store here, called Mother Earth.
I do buy frozen wild salmon fillets and North Atlantic haddock, along with North Atlantic whole prawns. They are the only animal products I buy. Raymond and I are almost vegan, but I seem to need the fish and the prawns I buy mainly for iodine.
I also buy unsweetened fresh soy milk and some unsweetened fresh soy yoghurt in the supermarket.
Some of the staff have got to know us quite well and we are known as the couple who buy healthily!
I can understand your enjoyment of popcorn.
I do not know if we shall hear from Debra. I think she just popped in to motivate people with her seven year anniversary.
There is nothing wrong with looking at other threads. I do feel concerned sometimes if false information is given out, but I do find that others correct it.
As for your shower question, I would think that the ceiling should be painted, but I am no expert. I would be concerned about tiles falling off (ouch).
I do hope that 2019 will be a very good year for you. Do you stay up to see the New Year in?
I just hope that Brexit will be resolved soon and that the Government will get back to running this country and try to solve some of the dire problems we have, most of which have been caused by this government!
Happy New Year, Mary.
Love.
Sylvia xxxx
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Hello everyone, posters and viewers,
I just wanted to say thank you to all of you for making this thread so successful. Remember those of you who are going through treatment that your cancer journey will come to an end and you will get back to a normal life. Keep looking forward.
Happy New Year to everyone.
Love.
Sylvia xxxx
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Hello, Sylvia,
I won't be doing anything for New Year's Eve. I take the view that it will still be 2019 when I wake up.
I've never read Les Miserables and gather that it's a bit of a plod. I shall watch the TV adaptation, though.
Susie
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Hi Mary,
Your Christmas seems to have been hectic, but full of family, friends and good food. Almost made me go for a long lie down on your behalf.
Offal, which used to be cheap and plentiful is now a delicacy in many upmarket city restaurants. It doesn't feature much in the diet of ordinary folk. I doubt if it would sell well in supermarkets or if many people would know how to cook it. I've never eaten brains or heard of a brain sandwich. We had mad cow disease in the UK and like America, brains were banned. I was vegetarian at that time and so were the children, but apparently meat from infected cows was already in our food and cheap beefburgers were especially suspect. Scientists predicted an epidemic of variant CJD, but only a few cases were identified. Long may it stay that way.
It must have been traumatic to watch your brother die of CJD. It's a truly merciless condition.
I read that some NHS hospitals use a weak solution of Heparin to flush PICC lines. Saline is always used on mine. NHS patients seem to be given Heparin injections if they are in bed for more than a very few hours. I was out of bed as much as possible doing exercises in my room. Heparin causes me to bruise easily and my mother and her extended family had haemorrhagic strokes at a relatively early age. Nurses wanted me to have it anyway as it was part of the routine, but I stood my ground on this one.
I don't envy you your - 18C weather one bit. We Brits love complaining about our weather and I'm no exception, but we're so lucky most of the time. Have to say that flooding is fast becoming a major issue here though. The Government has no idea how to handle it, but you could say that about most things these days. Oh for some effective leadership!
Soon be cracking open another new year. Hoping that your 2019 will be happy and peaceful.
Love,
Gill X
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Hello Sylvia,
It was good to hear that your apartment complex duties were uneventful and allowed you and Raymond to enjoy a peaceful Christmas.
I have googled Asia, the Christian woman trapped in Pakistan. Her whereabouts are unclear. Potential escape routes are being watched by the many Pakistani extremists with a rentamob mentality. Imran Khan is an extremely weak man and the Pakistan military seem to be running the country. Poor woman, I do believe we could and should have stepped in and given her and her family asylum.
The murder of Kashoggi is beginning to look as though it's being quietly swept under the carpet in the interests of maintaining good relationships with the UAE. How far will the UK go in appeasing these people? The lack of leadership both here and in the USA is worrying.
Brexit has taken up far too much time, the debate should not have been postponed. Plenty of people work over Christmas and New Year, MPs should have leave cancelled in a crisis . Meanwhile, the UK is left to fend for itself as if Brexit is the only important thing happening.
I listened to the BBC's very long serialised reading of Les Mis - approx 1976. It was excellent. The musical was entertaining, but as it was necessarily condensed into about three hours, it failed to capture the despair and misery. I know it's been said many times before that the advantage of books and radio drama is that the pictures are better. No substitute for human imagination I guess. My French is appalling, so I'm full of admiration that you read the entire book in French. I wonder how many languages you speak? Is Raymond equally fluent in French?
Wishing you and Raymond a very happy, healthy and peaceful New Year.
Much love,
Gill X
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Hi Susie,
I'll have to make the effort to have a look around Blickling Hall. The grounds are really beautiful in the Summer.
Glad that you enjoyed Norfolk. Michael and I had lived all over the UK before landing here. After a few years Michael was posted to Ascot and that was the first time I decided not to accompany him. He then moved to London for a few years while we stayed in Norfolk. So many people come for a short time and never leave. Still envy you the theatres, museums and art galleries in London though.
I'm hoping that at some point you might have tried jellied eels. I mentioned them to Mary, but haven't dared sample them myself. I pointed Mary in your direction for an explanation. If you haven't eaten jellied eels yet, perhaps you could put them on your 'to do' list for the New Year? Or not?
Wishing you a Happy and healthy New Year.
Gill X
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Gill, jellied eels?!?! Oh boy.
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Hi Gill,
I don't remember ever trying jellied eels, though smoked eel is delicious.
Susie
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Hi Viewfinder,
I've googled pictures of jellied eels and nothing could persuade me to try them. Apparently the dish has recently grown in popularity and one of our largest supermarket chains (Tesco) is now stocking it. No accounting for taste!
Gill
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Hi Susie,
Cley Smokehouse near Holt does a wide range of smoked fish, including eels. Somewhere to visit next time you're in Norfolk.
Gill
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Hello Mary, Gill, Susie and viewfinder,
I was glad to see that you are all having a nice chat together.
I have never tried jellied eels, although I am London born and remember Tubby Isaacs stalls selling jellied eels. I am told they are very bony. However, many years ago when I first went to France, I did try frogs' legs. They were cooked and tasted just like chicken. I also tried snails, also cooked and they were fine. I would not eat them today as I am very much in favour of a non-animal diet.
That is about all for now, as I am having a busy day of making sure all is fine to start January 1st 2019!
Keep up the good work. If anyone has information about Ki67 and what it really means I would like to hear from you. This Ki67 number seems to be causing unnecessary anxiety among patients, as it seems to be followed from oncologists by percentage survival numbers, all of which I find meaningless. I was not given any information about Ki67 and I also ignored all the negative comments about TNBC. Despite being told it was a poor prognosis, I ignored this, did largely my own thing and I am now 13 1/2 years out since diagnosis! Be positive and optimistic.
A Happy, Healthy New Year to viewers and posters.
Love.
Sylvia xxxx
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Hello everyone,
I am writing to share with you matters that come up in PMs, as I do not have enough hours in the day to answer all PMs and to keep the thread up-to-date.
I do understand that newly-diagnosed patients and those going through treatment have a thousand things going through their brains and they need to reach out to all of us who have gone through this breast cancer journey. It is natural to reach out to those who have had the same kind of diagnosis and the same treatment. The best way to do this is to join a thread where you will get all the information, tips, support and comfort that will get you through this.
The most important information you need is to know what kind of breast cancer you have, the hormonal status, the size of the tumour, the stage, the grade and what your treatment will be. It will be a mixture of surgery (lumpectomy or mastectomy), chemotherapy and/or radiotherapy. Decisions about these should be between you, your oncologist and your breast cancer consultant surgeon. On finishing all this you hope to be NED (no evidence of disease).
From certain correspondence I can see that some patients start worrying about their Ki67 number and oncologists then telling them a percentage of recurrence. I am wondering why patients should be put to worry over this. It seems to me it will make patients feel discouragement from the beginning. I have said that with me there was no mention of Ki67 and percentage of recurrence possibility. What purpose does this serve? My medical team were full of smiles when they told me I was NED. It is a good thing that I ignored the words 'poor prognosis' when I was first diagnosed. I know that these words were based on the fact that I did not have hormonal positive receptors and I have always been glad about that and the fact that I was not going to be offered anti-hormonal medication for years and years. My own personal advice about this Ki67 and percentages is to ignore them. We all know that breast cancer can recur and that there are no guarantees. We have to live our life normally and make sure we eat healthily and keep active and avoid stress. A recent piece of information I read in the BMA medical book is that 35% of cancers are caused by diet and about the same percentage by smoking. As I said, I do not know whether we can trust percentages, but if there is any meaning in those, it means a lot of what can happen is within our control. Of course, there are other risk factors for breast cancer that are beyond our control. I think we should all just live the day.
I think we should all try to avoid negative stress as it sends our hormones out of kilter. Telling someone about percentages of recurrence can only cause a lot of negative stress.
I also do not think it very ethical to push patients to have even more treatment by frightening them about what will happen to them if they do not have the extra treatment.
This seems to be going on in general practice, where GPs frighten patients into taking medication with nasty side effects by telling them the awful things that will happen to them if they do not.
A lot of patients also have lots of general aches and pains after breast cancer treatment and we all know that the treatment is toxic and takes its toll on our bodies. If you are concerned about any aches and pains just get it checked out. We all know that we can get neuropathy in the feet and hands, osteoporosis and lymphoedema and goodness knows what else.
I have to take a break now, but I hope this post is of help. Please post in if you have any further questions or anything to contribute.
Be positive in your cancer journey.
A healthy, happy New Year to everyone.
Love.
Sylvia xxxx
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Hello Sylvia,
I'd forgotten all about Tubby Issacs jellied eel and seafood stall. Jellied eels were £4 for a bowl and considered to be good for hangovers. I find that very difficult to believe.
My opinion in regard to the Ki67 test is very negative. The test relies on a sample of tissue. Small samples are sometimes unreliable. In the UK a further pathology report is issued following surgery for lumpectomy and mastectomy in order to verify the initial diagnosis and check for changes in the tumour. Some metaplastic cancers are still being misdiagnosed at first because the core needle biopsy has failed to collect cells from the two subtypes always present. The Healing NET Foundation has a clear explanation under Ki67 - what does it REALLY mean? It seems that many doctors have serious doubts.
Sylvia, like you, I'm very glad that I ignored the pessimism and negativity regarding my diagnosis. What good would it have done? I knew that metaplastic cancer is considered to be chemotherapy resistant by many Oncologists. Other Oncologists are much more optimistic. I'm optimistic.
I hope that your apartment complex duties don't give Raymond and yourself too much cause for concern in 2019.
Wishing you both a healthy and happy New Year.
Love,
Gill X
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Sylvia - I never had frogs legs though I almost did. When I was a teen I asked for them because I heard they tasted like chicken, which I love. So my dad took me down to the lake one evening when the frogs were out. After watching him catching and killing them, I refused to eat them. I'll take real chicken, thank you very much.
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