Calling all triple negative breast cancer patients in the UK
Comments
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Hello Gill,
Thank you for your latest post.
Like you, I have been following as much as I can the events in Parliament on Tuesday and Wednesday this week. It is hard to believe what has been going on. The behaviour has been really unacceptable and I think that on a few occasions Boris Johnson should have been pulled up by the Speaker. I do hope that Boris Johnson gets what is coming to him as he is not acceptable as a Prime Minister. He has brought shame on the position. I think we do need a General Election to clear the air but I do not think we want one focussed on Brexit. I tend to think the Brexit problems are insoluble.
The information that you posted about an article in the Guardian is not good news. I do think that patients should have the basics about their tumours. They need to know the type of cancer, whether the cancer is hormonal or non-hormonal and whether it is HER2 or not, the stage of the tumour, the grade, and what the proposed treatment is. I also believe that patients need to inform themselves and take charge of these details if they are not forthcoming from the consultants. The days of silent passive patients should be over because all this information about what to ask is readily available.
I am hoping to be able to get to M&S in Exeter to have a look at the bras you and Susie mentioned. We do not have a proper M&S here in Exmouth, just an M&S Food Hall.
I have just printed off the latest email from Chris Woollams dated September 2nd but I have not had time to read it yet.
I had not really finished all of the parts of the previous email dated August 19th. I had just finished the first article about the importance of exercise and was about to post about Indole 3 Carbinol – and its many benefits in cancer and health. There is so much detailed information but it can be shortened by expressing the importance of the cruciferous family of vegetables to get Indole 3 Carbinol. Chris Woollams has been talking about this for many years. We need to eat plenty of broccoli, kale, cabbage, Brussels Sprouts and other cruciferous vegetables. I remember reading in this article that there is also an increasing amount of research on Indole 3 Carbinol and triple negative breast cancer. There was also something about one study which says some scientists believe that DIM is the effective treatment for triple negative breast cancer. I believe there is more information on all of this on the Cancer Active site. You might wwant to click on Phytomedicine, DIM and triple negative breast cancer, as well as Indole 3 carbinol, DIM and triple negative breast cancer.
Finally, there was an article entitled Blueberries can fight TNBC.
I think we all know the importance of good nutrition. The emphasis on the first two parts of that August 19th email was exercise and nutrition and these are two thing that we can control.
I do hope all goes well with you on grandparent duties!
Like you, I do wonder about Marias and I do hope that one day she will pop back in. The same goes for Hanieh. I do wonder what has happened to her.
It is still quite busy here in Exmouth with holidaymakers and their pre-schoolers.
I have to close now.
Love.
Sylvia xxxx
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Hello Susie and Gill,
I did enjoy your comments about Boris and Susie, I loved your emojis. He is certainly not the flavour of the month for the three of us.
Do any of you read the weekly newspaper entitled the New European? The paper is pro-remain but I think whatever your opinion this paper is well written and very interesting. There are excellent articles and it takes time to read them but it is weekly.
Take care.
Love.
Sylvia xxxx
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HI Sylvia,
I always order my bras from Marks online as it saves having to wade through dozens of them to find the right size. You can almost certainly get them delivered to the foodhall in Exmouth for collection, free of charge.
Susie
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Johnson says he would rather be dead in a ditch than ask for another extension. Works for me!
Susie
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just had mammogram! All good! Onwards and upwards
Love Kath
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Hi Kath,
That's brilliant news. Hope you celebrated 🍾
Gill x
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Hello Sylvia,
I finally managed to buy some kiwi berries. I've always enjoyed gooseberries and these were like a softer, slightly sweeter version, so just right. Looking forward to my vitamin C levels going through the roof.
Enjoy your weekend.
Love,
Gill x
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Hello Gill,
I was glad to know that you managed to buy some kiwi berries and that you enjoyed them. I like them very much but I have not seen them again in my local Tesco store. I am waiting for them to be named a super food. We have not had a new super food for some time! Do you ever eat goji berries? They are dried ones, of course, but are nice sprinkled on top of yoghurt.
I shall keep on reading Chris Woollams email but simplifying it. I shall always emphasise nutrition over supplements. I am amazed sometimes when reading other threads on here at the number of supplements and medication that some patients/survivors are taking. That is definitely not for me.
The Brexit syndrome continues. Yesterday I watched the repeat of Questiontime and was horrified at the rudeness of most of the panel. It is a replica of Prime Minister's Question time, which is a misnomer because questions are never answered!
I did manage to make some progress with doing some of my own reading yesterday, which was a big change.
We are having some well needed rain today in Exmouth.
I hope you have a good week.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for posting to let us know that you had good results from your mammogram. Keep up the good work and keep looking forward.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for your post. The ditch works for us too. We are worried about pollution though!
I do wonder what is going to happen this week.
Thank you for the information about obtaining a bra. I have been getting mine online and have had the same bra for many years. It is an ordinary one and I sew flaps in the right cup to support the prosthesis. I get the flaps from Amoena. Everything is cotton. I shall go to M&S first of all as I like to feel the material and try one on.
I counted up the weeks until the end of the year. it is just fifteen weeks. Do you have any plans for autumn and winter?
I do hope you are keeping well.
Love.
Sylvia xxxx
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Hello Mary,
I have missed you on the thread through the first nine days of September and I do hope you will be back in touch soon.
The thread has been quiet but we three Brits have been busy keeping it going. I do hope that with the end of summer many of our group will return.
Helenlouise and Kath did pop in as did adagio. We still have no news from Marias and Hanieh, which is worrying. It is a long time as well since we heard from Val in the US and Nancy53 in Canada. There has also been no news from Viewfinder in the US and Flora in the UK.
I do hope all is well with you.
Love.
Sylvia xxxx
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Hello everyone,
It will be nine years on September 12th since I started this thread. I see that I have done 6,862 posts on the forum and most of them have been on this thread.
Sending best wishes to you all.
Love.
Sylvia xxxx
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Hello Sylvia,
Congratulations and thank you for all the important information you've given to me over the last year.
I hope to respond to your last post to me later. Michael's unwell with a stomach upset so I'm playing nurse today.
Love,
Gill x
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Hello Sylvia,
Congratulations on nine years of supporting us. Thank you for all the important information you've given me over the past year.
I hope to respond to your last post soon. Michael is unwell with a stomach upset so I'm playing nurse today.
Love,
Gill x
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Hello Sylvia and Susie,
Boris Johnson has (allegedly) decided to write to the European Commission and ask for an extension. He will then write again to say that his first letter was a mistake. I'd love to be a fly on the wall at Balmoral.
Gill x
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Hello, Sylvia
Autumn is drawing on fast with the sun setting at 7:30 now!
I am going to Glasgow for a few days in a fortnight, bit of sightseeing. Otherwise, I shall be in London, enjoying the usual round of theatre, films and exhibitions.
Susie
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Sylvia you are amazing. All those posts and all these years and you continue. Thank you.
I started back st my work today after three months off and my cousin asked tonight, what was that like and my reply was like I hadn’t been away. On a previous post you asked what I do. I train trainers. So my job is to train and qualify new and old trainers to teach whatever there area of expertise is. Very interesting as I get to work with people from all sorts of professions. The current qualification is over the top, very demanding for the learner, trainer and assessor. The program covers training program design, the VET sector, delivery and assessment. Anyway it is good to be back!
I hope you and everyone on the thread is well xx
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U are an amazing woman Sylvia! Each and every one of those posts has bought reassurance to so many women!
It’s getting warmer here in Oz right now and it’s going to be a hot summer with no rain on the horizon. I’m nursing sore ribs and cuts and bruising after I fell flat on my face before my drs appointment on the cement. Hopeless on uneven surfaces with the peripheral neuropathy. Injured my pride more than anything. Trying to complete my case studies for a pharmacology unit and snowed under with work. Stretching and rubbing out bruises with Arnica. It’s good stuff Sylvia. Stay well everyone
Much love
Kath
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Hello Sylvia,
Kiwi berries are very difficult to find here too. Perhaps they don't sell well or don't keep well. I haven't tried goji berries yet. At the end of last week I decided to slowly reintroduce some of the fruit and vegetables that I'd been forced to give up after c difficile. I may have overdone it as I now have colitis again, but not nearly as bad as previously - yet. Leaving tomatoes out of my diet has been so difficult as they were in almost everything I cooked.
Like you, I've also read about the supplements that people on other threads take. I'm not sure that this is a good idea and may be putting extra pressure on the liver and kidneys in some cases. They shouldn't be considered a substitute for surgery and other conventional treatments. Though I absolutely understand why some women are refusing chemotherapy, particularly if it's their second time around. It does have to be their choice - as long as it's an informed choice.
I watched a few snapshots of Parliament before the 5 week closure yesterday. Shocking scenes, but I do think that MPs were becoming lazy and failing to protect democracy so this might be viewed as a breath of fresh air. Suddenly they've woken up and some have given up their careers in protest. Better a revolution in Parliament than on the streets. Boris Johnson has to go before he does any more damage, that goes for Priti Patel too.
It was very cold and drizzled for most of yesterday. Today the sun is out and it feels much warmer.
You and Raymond are probably snowed under with pre Winter planning in your role as voluntary directors at the complex. I do hope that you both find time to rest and relax too.
Love,
Gill x
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HI Sylvia and all
I am back, and came back to find that my friend going through chemo treatment for Stage III Lung Cancer is in the ICU of the hospital and struggling a bit. She had her first chemo and 5 days later has neutropenia and a bacterial infection, she is confused and is a lot of pain. So I spent part of yesterday with her and family, and am going to offer to spend tonight with her, since her sis has been there since she was admitted and is exhausted. Sis will probably refuse to leave, and that is her choice. I do hope my friend can get rid of the infection and build up her blood again before she gets something nasty like pneumonia or a worse infection such as C.Diff, such as happened to Gill.
I very much enjoy traveling, but the last several trips have been occasions for friends and family members to have accidents and worse. Last September my brother had his bad spinal cord injury accident on Day 3 of our Alaska trip; in January a good friend got very suddenly ill with sepsis on the day we left and died a week later on the day we returned. In June we went to California for 5 days and another good friend died from his cancer, we did make it back for his funeral. I wondered what would happen this time, I guess this is it.
Other than that, we had a good time. We ate a lot of spicy food, and looked at beautiful mountain and high desert scenery; visited Indian village and churches and shopped for colorful Indian jewelry. The hotel had a nice spa, and a very good restaurant. I did not take many pics, I did all the driving, plus my phone is on its' last legs and battery is very short-lived. I will try to post something!
I am glad to see everyone here is well, although suffering from Brexit exhaustion. Not sure if I told you, I am going to have a (hopefully) small procedure on my shoulder next week to try and remove the piece of loose screw. I am hoping for minimal downtime, but not sure what will happen exactly.
We'll talk again soon, love
Mary
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Me with mountain view behind, sis-in-law took more pics and this is all I have now. Till she sends me some.
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Sylvia
I wanted to add my congratulations and say thanks for all the support and friendship you have given over the years to so many of us here. It has meant so much to me, you are a beacon in dark times.
And you show us all that long-term survival is really possible; when we are first diagnosed that seems a distant hope.
Talk again soon, love
Mary
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Hello Gill,
Thank you for your post on September 9th. What a week it has been with Brexit. I do not know how we are keeping sane with all of this and the behaviour on Tuesday evening was really bad. Somehow we have got to bring Brexit to an end but I cannot see how it is going to happen. I am not convinced that we shall leave on October 31st.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for your post on September 9th. I do hope you have an enjoyable time in Glasgow and that you may be able to post some photographs.
The long dark evenings seem to have come on suddenly and we have to get used to it.
It is good that you have all sorts of outings in London to keep you busy.
Love.
Sylvia xxxx
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Hello Helenlouise,
Thank you for your very kind words. I have been only too glad to try to help patients through their cancer journey and to motivate them.
So many women have been on the thread during the past nine years and they have all been very brave and friendly and I find it so interesting and enriching to meet women from all different parts of the world.
Your work sounds so interesting and it must be very fulfilling to work with all different sorts of professional people. I am sure you are doing an excellent job.
Make sure you take care of yourself and that you keep looking forward.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your very kind words. I am only too glad to help anyone who needs it. The cancer journey is not one that a patient should have to make on their own. They do need comfort and help from those who have made the journey and can understand what they are going through.
All of us can pick up helpful tips and information no matter how far we are from diagnosis.
I was talking to my friend, a retired nurse, who adopted me when I was first diagnosed over 14 years ago and we have remained friends. She said I shall be calling myself a cancer survivor but I still do not take anything for granted.
I was sorry to read that you had fallen flat on your face. We do have to be careful with this peripheral neuropathy. You cannot go wrong with Arnica cream for clearing up bruises. There is also an Arnica gel for pain which is very good.
It is probably good therapy for you to be snowed under with work. It will keep your mind occupied.
I am wondering how the flu will perform this autumn and winter. Some people have been suffering through the summer. Strangely I have heard no mention of flu vaccinations so far but I have heard talk of bad measles outbreaks and trying to pass a law not to allow children into school that have not been vaccinated!
All for now.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your post on September 10th. I shall answer later as I am out of time.
Hello Mary,
Welcome back and thank you for your posts and the photograph in which you look great.
I have to stop now but I shall try to catch up tomorrow.
Love to all.
Sylvia xxxx
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Hello Gill,
Thank you for your post of September 10th.
I do not know what goes on in supermarkets, except that individual stores do not seem to be in control of their stock. Everything seems to be decided at central office. Products we like are forever disappearing. For a long time we bought Vogel bread at our supermarket and then it disappeared. We also buy Surcare washing liquid for the machine and Surcare fabric conditioner (non-bio). These can disappear for months and then come back. A lot of bread can hardly be called bread, so we are for ever chasing quality products.
I do hope your colitis clears up quickly. Like you, I use lots of cooked tomatoes because they are probably the best source of lycopene.
I feel that all pills are foreign to our bodies and not good for them. I limit mine to vitamin D and probiotics and even for the probiotics I prefer to get it from food.
I do agree that women have to make their own choices about their breast cancer treatment, but it needs to be informed and not pushed on them.
The news about our cancer treatment in the UK was on the news on Radio 4 this morning and it is not good news to be bottom out of the 7 developed countries. It is something of which to be ashamed. I think we all need to listen and watch our bodies and if we feel there is something wrong we need to see our GP and get it sorted. We should not necessarily believe out GPs when they say all is fine. If we feel it is not we must insist on being referred to a consultant. An early diagnosis is important and could result in avoiding all the drastic treatment.
Yesterday I had a busy day here and in the evening Raymond and I watched a replay of the prorogation ceremony in Parliament. It was unbelievably archaic and moronic. We need to get away from all this nonsense. Did you see it? I dread to think what other countries make of it. We need a Parliament for the 21st century and not one going back into the mists of time!!
That is about all for now.
Love.
Sylvia xxxx
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Hello Mary,
I was very sorry to read that your friend is going through so much and I do hope she will make a good recovery. It is not good to be in hospital because of the nasty bugs that you can pick up there.
I was glad to read that you enjoy travelling. It does make a good break for you and you obviously had a good time.
We shall all be thinking of you next week when you have that procedure to try to remove the piece of loose screw.
I do think we are all fed up with Brexit and I am not sure how everything is going to end. I do not think that Parliament should have been closed down for five weeks. Boris Johnson is very superficial and does not like scrutiny. He should not really be the Prime Minister, as he has not been elected by the people, just by a handful of Conservative members. We shall probably be having another General Election and another referendum.
That is all for now.
Love.
Sylvia xxxx
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Hello again, Mary,
Thank you for your second post and for your kind words. It makes the nine years exactly today worthwhile. I did not imagine back in 2010 that this thread would become so big and go on and on. So many really nice people have been on here and we have always kept it friendly. I started it because I just wanted to give something back and help, comfort, inform and encourage everyone to get through their breast cancer treatment. I really discovered bc.org by accident when I was trying to get more information about hyperparathyroidism and the connection with breast cancer, as well as to inform myself about the surgery to cure the parathyroid problem. It was then that I met and got to know very well Sam52. I was very scared about the surgery and was only just four years away from the breast cancer diagnosis. I had the parathyroid surgery on November 11th 2009 and all went well.
You have been on the thread for over five years now and have been very active and supportive and I look upon you as a good friend.
Take good care of yourself.
Love.
Sylvia xxxx
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