Calling all triple negative breast cancer patients in the UK
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Hi, Hanieh,
What have you decided to do about the steroids? Maybe when you get home you should call the doctor's office. Even though he isn't there surely someone could answer your questions. I don't like those pills either, but hesitate to give you definitive advice one way or another. And I do know one has to taper off the dosage, don't stop them all at once.
I agree with Sylvia, I think it's good that your period is back. Isn't it amazing how long it takes for our bodies to return to normal? That tells us what very strong drugs we were taking in. Yes, I think you should be glad it is back.
Thanks for your words of encouragement about my problem with the weak legs and fatigue. I do love to travel, but I find I have to relax and rest more than I want. I can't just go here and go there for days on end, as I used to do. But you are right, it is a great mental break. When I am home there is so much to do and keep up with that I am almost constantly on the move, it is only by getting away that I can truly relax. It was indeed a very, very difficult time when my husband and I were both so ill. It was very stressful when it was just him that needed caring for, when it was both of us it was simply surreal. We had a home health nurse who would stop by a few times a week, and family members would visit. Other than that, we managed on our own somehow.
Enjoy the rest of your time away, and talk to you soon!
Love, Mary
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Hi, Sylvia,
Congratulations! I see from the headlines how the election went, and looks like everything is shaken up. At least if you believe the newspapers. I am glad the voice of the people was heard, and that it is finally over. I wonder what the opposition will do now, I hope they will fold up their tents and go quietly away and figure out how to become just UK again.
I'm sure that Brexit news is overshadowing all else for today. As for our board here, I have gotten a bit behind on the posts, I am having the MRI on Monday, the EMG is not till July 21. You are right, the peripheral neuropathy is only the feet and hands affected. But there are also sensory neuropathy and motor neuropathy. It is possible that I have developed one of those that is affecting my legs. My doc said the EMG should tell us about that.
I did read that Chris Woollams shared your view on Brexit.
I shall close for now, and let you revel in your victory!
Talk to you soon,
Love, Mary
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Hello Mary,
I am indeed very glad that the voice of ordinary people was heard in this referendum and that the establishment did not win. I have every confidence that we are able to stand on our own two feet, but I think there is still going to be a lot of nastiness from the remain.I have heard that getting our freedom back can be very simple and that all we need to do is revoke the 1973 act and we could be out of the EUby Monday!!
I am so glad that David Cameron resigned this morning. There will be a lot of fighting between the politicians.
Sorry, the phone is ringing, so I will continue later.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Congratulationson on your victory in referendum. I'm really happy you achieved what you really wanted. It's time for all the politicians to hear their people's voice.
Love
Hanieh
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Hi Mary
I hope by doing all the tests you and your doctor find a way of overcoming all the problems.
Actually, I have decided to stop taking those pills completely just as dipherline injections. I know it may sound foolish but this is the only way to keep my peace of mind. I just want to let my body do its job in its most natural way.
Hope to hear some good news from you.
Hanieh
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Hey Sylvia,
congratulations on Brexit! I really have no idea what the consequences will be, As long as I can travel to London for shopping and the musea, I don't mind :-)
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Hello Mary,
I do hope all will go well tomorrow and in July and that you will get some peace of mind.
It does make me wonder about all the damage that our cancer treatment causes to the body and whether it ever really rec overs properly. It is the price we have paid to stay alive.I certainly feel that my feet will never feel the same again.
There is non stop talk here about the result of the referendum and such a lot of sour grapes. The people have spoken and the rich and powerful do not like it.
That is all for now.
Fond thoughts,
Sylvia.xxx.
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Hello Hanieh,
Thank you for your kind words. I do hope the words of the people prevail here. The losers are not being gracious in defeat.
Are you back home now? How are you feeling?
All for now.
Fond thoughts,
Sylvia xxx.
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Hello MoreShoes,
Thank you for your kind words.
I am sure your trips to London will remain safe and sound.
It seems it will be a complicated process to extricate ourselves from the EU, but there is a lot of joy here about the fact that the ordinary people of this country have at last said loudly and clearly that we are fed up with sitting back and being dictated to.
How are you feeling now? We are all thinking of you.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Now I am sitting in the hotel lobby waiting for the bus to transfer us to Tbilisi. Our flight to Tehran is at night and we will have a 6 hour ride from Batumi to Tbilisi.
Everything was so good and now I feel energized enough to resume back my life in Tehran again. Summer will be very hectic for me as I am the supervisor too.
This trip gave me much experience as well as pleasure. Georgia is not a developed country, but people seem to enjoy their lives. Here in Batumi , with the coming of summer, their night festivals start and there are so much music, local dances and fire works until early in the morning. We saw many tourists from different countries having their vacations here. The local food was also good since everything seemed fresh and organic. It was really worth visiting here.
Wish for more travels
Love
Hanieh
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Hello Sylvia,
I have 10 minutes to give more detail why that Daily Mail article is false.
If he was not diabetic last year at his annual check up chances are he was Pre-diabetic when he had his next check up so firstly he was wrongly diagnosed. If he was diabetic his mmol/l would have been a lot higher when he went to the doctors around the very high teens or as high as 30 it was not It was only 6 mmol/l. I wished mine was that low!
My blood sugar lever is controlled fairly well but throughout the day my sugar level ranges between 4 to 16.
A non diabetic persons sugar lever will be between 4 and 7 throughout the day.
He claims "After just one day my glucose levels had dropped from 6mmol/l to 5.9mmol/l." That's impossible as 10 minutes later his level could have been as low as 5 or as high as 9.
If he was on diet alone and he was diabetic he could not get anywhere near 5.9mmol/l so quickly.
My underlying sugar lever HBA1C has been between 7 and 7.8 mmol/l throughout the 12 years I have been diabetic. This is a special blood test diabetics have once a year and used to involve fasting for 12 hours before the test.
According to official figures yes " I would think that 11 stone 10 pounds and six foot tall would be an ideal weight for a man." that's true but the figures themselves are a joke. I am more skin and bone than anything else. My ideal weight is 12.5 stone which would put me near the overweight category according to official figures.
Nearly every footballer is overweight according to government figures even though they are solid muscle and super fit.
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Hello peterandliz,
Thank you for your post. I must admit diabetes seems to be a very complicated disease. A bit like cancer, it seems to be very individual and probably multi-causal. Since I am not diabetic I cannot speak from experience. The people around me that have diabetes seem to handle it in their own way. No two are doing the same thing. One of my uncles on my mother's side had diabetes 2 very late in life, and was as thin as a rake all his life. He died at 90, but not from diabetes. I have my cousin and he is living with it. He is 68 and has had it since he was about 50. For ten of those years it was undiagnosed.
I have been reading up a little bit about it today and found the following article easy to read and quite interesting. The link is:
How is life treating you and Liz these days? What happened to the young boy, Darren, who was surviving against all the odds from cancer.
These days with cancer all the articles in the newspapers seem to be about immunotherapy.
Are you still travelling much? What happened with your chocolate fountain business?
Best wishes.
Sylvia
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Hello Hanieh,
I have been imagining you sitting in the hotel lobby waiting for that bus to transfer you to Tbilisi. You are probably on a plane now.
I was glad to read you enjoyed your stay and that you feel energised. Look after yourself during your busy work during the summer.
It sounds as though the people in Georgia seem to enjoy their lives or to make the best of it. Their lives seem simple and that is probably the best way to live.
How long will your new teaching term last and how do you fit in the supervisor part? Do you have to put in a lot of extra hours?
Since in the past I have taught English as a second language, I am very familiar with the most common mistakes that students make with English grammar. You may like to know that native English speakers make them all the time and they probably go unnoticed, but I am very aware of them. The English language has deteriorated a lot in recent years.
Are you still translating the Rainbow Diet?
I am sending you very best wishes and continue the good work of being positive and putting thoughts of cancer away in a dark corner.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
I was just wondering how you are. Are you away in some sunny land? What did you think of the result of the referendum? What do you think will happen in Northern Ireland now?
The weather here in Exmouth has been pretty dismal during June and not a bit like summer.
I hope you are well.
Best wishes.
Sylvia
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Hi Sylvia
Haven't been away apart from visiting family in County Derry.
NI needs to find some way of staying in the EU otherwise it is toast.
Here is link 19?:
https://www.google.com/url?rct=j&sa=t&url=http
/springerplus.springeropen.com/track/pdf/10.1186/s40064-016-2200-y%3Fsite%3Dspringerplus.springeropen.com&ct=ga&cd=CAEYACoTNTE5ODg1OTUxNjEzMjkzNDI4MzIcMDQ4NzFlOTdhMzBmMjBjZjpjby51azplbjpHQg&usg=AFQjCNFt2KAgEAevS7Uk7Gxqq-pZxvoVBAThis opens as PDF file
Michael
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Hello Sylvia,
I have read through the link and it does explain some things well. I have copied one paragraph below which clearly states a reading of 6 gives a diagnosis of Prediabetes and a patient should be tested again in a years time.
"An A1C of 5.7 to 6.4 percent indicates prediabetes. People diagnosed with prediabetes may be retested in 1 year. People with an A1C below 5.7 percent may still be at risk for diabetes, depending on the presence of other characteristics that put them at risk, also known as risk factors. People with an A1C above 6.0 percent should be considered at very high risk of developing diabetes. A level of 6.5 percent or above means a person has diabetes."
Darren is fine living a normal life at the moment.
We sold our motorhome at Christmas and have not replaced it. I stupidly started up a mail order business selling high heel shoes after Christmas so I am stuck mailing out about 120 pairs of shoes each week. Seemed like a good idea at the time and its been a success but it was never my intention to mail out the shoes myself but that all fell through.
All 3 of us could have gone to Florida for 2 weeks through Thomson holidays 2 weeks ago at a price of £369 each (amazing price) but we did not because of the shoes. I now have 2500 pairs of shoes in my house.
http://stores.ebay.co.uk/Heelz-Addiction?_trksid=p2047675.l2563
I also cut out any advertising of the chocolate fountain business to reduce bookings to allow us to travel more but I have still received a lot of bookings. The last weekend in June is always the busiest weekend of the year. We have supplied 8 chocolate fountains this weekend to events around the south East of England.
I have put the shoe business up for sale. hopefully it will sell by August if not I will close it down to allow us to travel the second half of the year.
These last few weeks have been great football and politics I could not ask for more.
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Hello Michael,
Thank you for your post and for the link. I am pretty sure that it is link 20. I shall read it when I have a bit more time.
The political situation seems a bit chaotic at the moment, but I am sure it will sort itself out eventually when all the hysteria has died down. It is all very complicated with Northern Ireland and Scotland but for the moment I would think we have to act as one country, the UK, which seems anything but 'United'!
It looks as though both major parties are split and at war. I do think there are too many politicians who are too narcissistic and want positions for their own ambitions.
I am not sure that Boris will end up as Prime Minister and I do not know whether Jeremy Corbyn will survive as leader.
I am convinced that the politicians are still not listening to the people and they still do not get what ordinary people are going through.
Wishing you all the best.
Sylvia
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Hello Peter and Liz,
It is all very interesting to read about the tests to diagnose pre-diabetes and diabetes. I keep reading diabetes is on the increase in the UK. I do wonder whether people realise what a nasty disease it is and whether they know all the possible complications.
I was so pleased to read that Darren is fine and leading a normal life. Long may it continue.
I was very interested to read about how you started up a mail-order business selling high heel shoes. To sell 120 pairs of shoes each week seems excellent to me. I am trying to imagine 2,500 pairs of shoes stocked in your house! Women do like to have a lot of shoes. Do you get many returns? Are the shoes of any particular brand, like Hotter shoes? I have just had a look at the link. Those shoes are, indeed, very high heels, and they are reasonably priced.
I was glad to know that your chocolate fountain business is still successful.
You must be leading a very busy life with these two businesses, so I can understand how you must need good holidays from time to time.
I do hope you manage a holiday somewhere to get a break.
I do not know about the football, but I think the after effects of the referendum will be discussed for a long time and I think we are going to get a general election in the not too distant future.
Wishing you all the best.
Sylvia
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Hello everyone,
I saw a post on one of the newly created threads within TNBC that someone was posting to say she was going on a trial in which she would be taking PEMBRO and taxol, PEMBRO = pembrolizumab. I was wondering if any one knows anything about this immunotherapy drug.
I looked up on the internet and can only find its use with reference to advanced melanoma.
I hope everyone is well.
Here in the UK summer seems to be passing us by. It is just 16C today and this is being compared to June 28th 1976 which was a very hot summer and the temperature was 36C. I was teaching at the time and remember how hot it was and there was talk of closing the school and drought had meant that water standpipes being installed in the streets.
All for now. Best wishes.
Sylvia
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Hi, Sylvia and all,
Brexit has certainly upset the applecart, I see that now some of the other countries are pondering the same move. Reading the news this morning and seeing the names of individuals who hate the whole idea has made me like it even more! Do you have any idea what the royals think of the whole thing? I have not heard that talked about, perhaps no one cares.
I had the radio on most of the day yesterday and heard quite a few clips of Nigel Farage speaking to Parliament. He can give a barn-burner of a speech! For the last several weeks we had a visiting priest in Church on Sundays while our priest was on vacation. Our visiting priest was an Irish citizen who gave very long sermons and usually about current events. One was about Brexit, he was all for "Leave": he was looking through his Catholic eyes and does not like the EU being in charge of laws affecting abortion and marriage in Ireland. We will all be glad to see our usual priest back, he keeps things brief and pointed yet still meaningful.
I had the MRI on my lumbar spine but no results yet, probably later today.
Michael, I tried to open Link#19 (20?) but could not get it open. I tried a couple of different ways.
16 C (60 F) is very cool to be on a beach, but I imagine Exmouth is busy anyway. We have been very hot and dry here, we had a little rain over the weekend but not enough. I have tomatoes in pots, I have been picking them and some of them taste like they are already cooked, just from sitting in the sun. This week we are having a little break from the heat, it is only in the 80s (around 30C). It's very nice this morning, I should be outside.
I shall talk to you soon,
Mary
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Hello Mary,
Thank you for an interesting post. I always enjoy reading what you have to say. I shall talk more tomorrow when I hope to have more time!
These are interesting days here in the UK and I feel that I am living important history.
I do not know how all this will end and I do hope the establishment will not manipulate and twist everything, thus going against the will of ordinary people.
The last link was link 20. I have not yet printed it out to read but it is all about TNBC and obesity in China. I do not know where we are going with all this information. Sometimes it is just too much.
Sending you fond thoughts.
Sylvia xxxx
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Just what you wanted, here is some more information!
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Just what you wanted, here is some more reading material. I am always interested in reading about the link between stress and cancer. If I have posted this before please forgive.
Mary
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Hi, Sylvia,
This is what the MRI report says:
My MRI on lumbar spine results show no cancer, which is good. I still have the "bone marrow signal abnormality" which is a spot on the spine; they called it a cyst before, now they call it an atypical hemangioma. It hasn't changed size in several years, so they call that good.
My degenerative arthritis is a bit worse than it was last year. I have some bulging disc, some stenosis, and mild scoliosis. Thus the pain in my lower back. I asked if that could be the cause of my leg weakness, my GP said it was very possible but not sure how much the nerves are compressed. He does not THINK it's bad enough for surgery. We will wait till after the EMG on my legs to assess the neuropathy, and even then there is probably not a whole lot I can do about any of it. But it would be helpful to have answers to my questions. Yesterday I did quite a bit of activity with walking, and when I got home my legs were in a lot of pain, as well as feeling weak. I put my hot packs under them and laid around the rest of the night, today is okay but this is definitely putting a damper on my life. I have not had this pain before, it has been just the weakness. When I talk to the doc again, I am going to mention veins, perhaps checking them. I cannot think of anything else to check. If I figure out what is causing this, I will learn to live with it; I just want to know.
The GP did suggest that if we think it is the spine compression then perhaps a lumbar epidural would help. That doesn't work for everyone, so I would have to think about that.
We have the 4th of July holiday coming up, and the meteorologists are calling for rain all weekend. We need rain badly, but it will dampen a lot people's plans, those that have a long weekend off and want to do outdoor activities.
I hope everyone here is feeling well!
Mary
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Hello Mary,
Thank you for your posts.
I did read link 20 from Michael and found it very interesting. I was surprised about the number of women being diagnosed with breast cancer in China. There was a time when China or Chinese women were quoted as having very little breast cancer. I can only think that as they have become better off they are switching to the Western diet and putting on weight. It was especially interesting to read that it was weight around the middle and that it was connected to being diagnosed with TNBC. I wonder why that would be? All I can say is that the people diagnosed with breast cancer whom I know all are slim, very physically active and tend to eat properly. What do you think?
Thank you for the link that you sent. I hope to get to read it this weekend.
Thank you for posting about your MRI scan and thank goodness it is clear of cancer.
What is an atypical hemangioma? It is good news that whatever it is has not changed in size in several years.
I do think it is good news if you can avoid surgery on the back.
I shall be very interested to know the results of your EMG and I do hope it will be good news about the neuropathy. I understand how you would like some kind of peace of mind through answers to your questions, but, unfortunately, medicine is not an exact science. It is good that you are able to have all these scans. I doubt if we would get all this under the NHS.
I think you have to be very careful about anything to do with the back or spine. I know a few people who have had surgery for back problems and it has messed them up for life.
I do hope you will have an enjoyable July 4th. How will you be celebrating?
I am so glad it is Friday. I have had a manic week here with my volunteer director work in the complex where I live. I have books and magazines that I have not been able to look at. I did read Vita magazine which I find very informative. You can read it on line and the good thing about it is that the articles are authentic experiences of patients going through breast cancer treatment or survivors. The magazine is celebrating its 10 year anniversary. I was so lucky to get hold of these magazines in 2006 when I was going through treatment.
The other magazine that I treasured at the time and discovered in 2005 when it got started was icon magazine. Back in 2005 I did not really use computers and did not have forums like this one to help. I discovered bc.org in 2009 when I was looking for information about an overactive parathyroid and a possible connection with breast cancer.
I think it is important on this thread that we keep to the basics about breast cancer in order to help new patients and not overwhelm them. We have to keep mentioning discovery of a lump, diagnosis of breast cancer, mammograms, biopsies, etc., then type of breast cancer, status of receptors, stage, grade, and decision on treatment, surgery, mastectomy or lumpectomy, lymph nodes, chemotherapy, radiotherapy, reconstruction. I think all of that is enough for new patients to deal with at first.
I shall write later about events in this disUnited Kingdom!!
To adagio,
Happy Canada Day.
Fond thoughts, Mary and everybody on the thread.
Sylvia xxxx
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Hello Mary,
I printed off your link today and I must say how interesting I found it. Since the beginning of this thread we have often discussed what we think may have caused our breast cancers and one in particular was the connection between having breast cancer and stress. I thought the heading of this article was truly interesting. I am not sure how many people viewing this thread are picking up on the links, but I think they are missing out if they are not. The title is: The Link Between Stress and Cancer....How Fat Can Reverse Its Deadly Effects.
This article starts off describing how we all face daily stress from the moment we wake up and how this stress affects the hormones etc. in our body. I was interested in lines such as 'Yet your stress levels are the little known cause of most chronic diseases – including cancer. Disease feeds off stress'.
I do hope you will all have a look at what the article says about the stress hormone cortisol.
Since Mary has taken the trouble to post this link, please have a look at it and pay particular attention to the following headlines.
The Damaging Effects of Chronic Stress.
Emotional Stress is a Major Contributing Factor to the Six Leading Causes of Death in the US: cancer, coronary heart disease, accidental injuries, respiratory disorders, cirrhosis of the liver and suicide.
In the UK nearly 180,000 people die each year from some form of stress related illness.
Stress, Cancer and Your Immune system.
The Role of Stress in Breast Cancer.
The relationship between breast cancer and stress deserves specific consideration.
Please read all the details under this heading and remember "Stress suppresses NK-cell activity. NK cells are the strongest link to fighting certain types of cancer including breast cancer. These natural killer white blood cells prevent metastasis and destroy small metastases'.
Have a look under the following heading: Stress Reduction and Healing Essential Fatty Acids: Your 2 step approach to Cancer Prevention.
Have a look under: The Job of Essential Fatty Acids: This is all about the importance of having a balance between omega-3 and omega-6 fatty acids.
The next important heading is: Best Natural Sources of Omega-3 Essential Fatty Acids.
Finally, Best Natural Sources of Omega-6 Fatty Acids.
This article is very easy to read and is not at all technical.
Thank you very much Mary.
This article is by Daily Superfood Love. You can subscribe to this for free.
The fighting continues here in the disUnited Kingdom since the Leave side won the referendum. Both the Conservative and the Labour Parties are into nasty back stabbing. It is awful to witness what is going on. The Conservatives have launched a leadership election since David Cameron quit as Prime Minister. Boris Johnson, who was an important part of the Leave team, and was expected to become Prime Minister, was betrayed and stabbed in the back at the last minute by Michael Gove, who was his partner in the Leave campaign, so Boris stepped down. It was all very Julius Caesar, Brutus and Shakespeare-like. I think Gove is now going to be done in by his party and we shall have a race between Theresa May (Remain) and Andrea Leadsom (Leave). I think in all of this with Gove's betrayal it is a case of 'cherchez la femme'.
As for the Labour party, the MPs have turned on their leader, Jeremy Corbyn, who was elected nine months ago with the biggest backing ever (60%). The MPs are trying to blame him for Labour supporters voting against them and backing Leave. I think Labour should have backed Leave and would then have done much better. The MPs have now staged a coup against Jeremy Corbyn and are trying to force him to resign. I hope he does not, because he is a good and honest man and his policies are moral. I do not believe he really supports Remain. I am hoping that some woman called Angela Eagle will not replace him. She backed the Iraq war and she is in favour of Trident. They say they are looking for someone with charisma, but I cannot see that she has any. If they force Jeremy out I hope his Shadow Chancellor, John McDonald, will be able to take part in the leadership and get elected.
What we really need now is a General Election.
That is about all for now. I hope you are having a good Long Weekend and doing something relaxing.
Sending you fond thoughts.
Referendumd out.
Sylvia xxxx.
I have just been watching Lee Camp, Redacted Tonight from the US. It is so funny but so profound. He did a piece on Brexit, saying Brexit now Regrexit! Do you ever watch it?
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Red fuchsia in full bloom in our grounds.
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I was just diagnosed with triple negative breast cancer. Thank you for the encouragement of healing.
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JanetCO-
Welcome to BCO! We're sorry for the circumstances that have brought you here, but we're glad you've joined us, and hope you find the support you need as you begin down this road. You are not alone!
The Mods
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