Calling all triple negative breast cancer patients in the UK
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Hello Kath,
Just read about the Bush fires on BBC news. I'm hoping that you and your family are nowhere near. So many homeless and already 3 people have lost their lives. I'm so sorry.
Love,
Gill X
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No we are too far inland, the fires are in the coastal areas where there are lots of trees! Most of western NSW has been in drought for a couple of years now bro not much left to burn! The areas near Sydney have lots of trees and it’s been getting dryer there with no water so some of those areas have been going up like tinderboxes. Tuesday is expected to be quite dangerous with high temps right across NSW do it’s expected to get worse!my son is a fireman and they gave been calling for reenforcements from all states! I’m hoping he won’t have to go! It’s so sad
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Hi Kath,
Your last photo is absolutely shocking. I hope that people are leaving their homes in time. All their possessions, family photos and history gone. Trees, animals, birds and wildlife destroyed. Devastation on this scale must be very hard to come to terms with.
My thoughts are with everyone caught up in this, including people in the emergency services and people like your son who may yet be called in to help. Fingers crossed that he won't be needed, it's so worrying for you and the rest of the family though.
Much love,
Gill X
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Hello Kath,
Thank you for those photographs. It is absolutely unbelievable what is happening with these fires. It must be terrifying for people.
It is very bad in California with these fires as well.
Here in the UK we are having a lot of rain and in the north of England there are serious floods. Apparently if we get much more rain it will beat the record rainfall that we had in 2000.
Raymond and I watched the second part of Michael Portillo's Great Australian Railway Journeys. It is absolutely fascinating for us. That Indian Pacific train looks so luxurious and it would be quite an adventure to go on it.
I do hope you might manage to read the book I am reading at the moment by Bill Bryson entitled The Body, a Guide for Occupants. So research must have gone into this book. I have just need reading the last few chapters.
Chapter 20 When things go wrong: Diseases.
Chapter 21 When things go very wrong: Cancer.
Chapter 22 Medicine Good and Bad.
They are well worth reading.
Chapter 12 The Immune System is also very interesting.
This book is well worth buying.
I hope all is well and please keep in touch.
Love.
Sylvia xxxx
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Happy Sunday Everyone,
I just wanted to pop in to say hello, and that as far as I know, I'm still fine. I just had an oncologist checkup, and the next one isn't due until April.
In June, my Dad died of Pancreatic cancer, so it's been a struggle to move through that emotionally, socially, and legally. It was devastating and unexpected. We are just now getting a little time and energy back.
But it's nothing new that I always wish for more time and energy for everything that I want to do every day. I scanned through the thread very quickly, and noticed the beautiful picture of your tree, Mary. And I saw mention of the Bill Bryson book, Sylvia, which I will definitely look into. I have been charmed by his writing since he wrote A Walk in the Woods.
And as always, I'm trying to strike a balance between not panicking about aches and pains, but not ignoring potentially serious symptoms.
I have gotten back to weekly food prepping. This is a picture of an arugula salad, with roasted persimmons and chickpeas. I had some sheep's milk feta and pomegranate seeds on hand, and so decorated it with those, and I thought it was pretty. I hope you are all able to do something you enjoy today.
Cheers,Pam
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Hi Pam,
I'm sorry that you've had to go through the trauma of losing your Dad, just when you're struggling with your own issues. I could do with getting some of my energy back too, I hate getting tired so easily. Like you, I worry about the possible significance of aches and pains. I worry, but tend to ignore everything, which probably isn't very sensible.
Pancreatic cancer is just appalling. I lost a friend to it last year, by the time he was diagnosed he was already close to the end so was only offered Palliative Care.
As the days pass, I hope you and your family will find yourself in a better place.
Your salad looks really colourful and delicious - healthy too.
Gill x
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Hello Pam (lily.p6),
It was so nice to find that you had popped in for a visit. Our group is very small now and I sometimes get disappointed.
I was glad to read that all had gone well at your check up with your oncologist. April is far off so just enjoy your days to the full.
I was so sorry to read that your dad had died of pancreatic cancer. This kind of cancer is very hard to treat and seems difficult to detect.
I remember how busy you were when you were posting regularly and I know that you had a busy job.
I was glad to know that you did some scanning through the thread. There is always a lot of information on this thread. Mary has been having a difficult time with her arm and has not been posting as much as she used to, but I do understand because of all she is going through.
I am sure you will enjoy the book by Bill Bryson entitled The Body: a Guide for Occupants. I have just finished the last chapter, chapter 23 entitled The End, which is about the end of life and inevitable death. This is a very serious book with lots of information and it is highly readable. There is wit in it as well. I had to laugh at the last line of the book:
"And that's you gone. But it was good while it lasted, wasn't it?"
You can learn a lot in this book, especially in chapter 21, When Things go Very Wrong: Cancer. There are small illustrations at the beginning of each chapter which I find very profound and in a way amusing. For example, at the beginning of chapter 21 there is a small illustration of cancer cells, followed by the quote "We are bodies. They go wrong".
Tom Lubbock, "Until Further Notice, I am Alive!"
Thank you for the lovely photograph of your salad meal. I do remember how much you enjoyed cooking and how much we discussed healthy eating with reference to breast cancer. Your salad looks really appetising and of course it is healthy. It has lots of things in it that I love, such as chickpeas, persimmons and pomegranate seeds. I am not familiar with arugula salad but it looks healthy. I have never had sheep's milk. I stick to unsweetened soy milk.
I do hope all is well with your husband. If I remember correctly he is Colombian like Marias. She comes in from time to time, but has been very ill.
Our regular posters at the moment are Mary, Gill, Kath, HelenLouise and adagio pops in regularly. I have now been doing this thread for over nine years and a lot of people have passed through it during that time.
Today it is exactly nine years since I had surgery to remove a non-malignant adenoma on the lower right side parathyroid. I do believe that this over active parathyroid gland contributed to my TN breast cancer.
I am now over 14 years since diagnosis but I still take nothing for granted. I was very surprised to read recently that someone mentioned being 'cured' of breast cancer. Whether we are hormonal or non hormonal, we are not cured. We all know that our cancer can return and spread, but we put all that into a dark corner and get on with our lives.
Thinking of you, Pam.
Love.
Sylvia xxxx
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Hello Sylvia,
The more lies I hear from Johnson, the more I worry about our NHS. He is clearly planning to outsource pharmacy supplies to the States. He probably has vested interests there. Today there are photographs of him visiting yet another hospital and the nursing staff are all smiling happily. Ward managers should take control and bar him. The way he uses patients as photo opportunities is sickening.
I was wondering how Marias is getting on. She was certainly up against it last time we heard from her. All those stairs to climb when she's already exhausted from her treatment, I hope that she's been able to find a more convenient apartment.
I think we're all keeping our fingers crossed for Mary's arm. I know shoulders are very complex, but Mary seems to have been particularly unlucky.
Nothing much to report here. My cough is still annoying, but I'm otherwise healthy enough as far as I can tell. I think there are so many people with colds at this time of year that it's difficult to avoid catching one.
I do hope that the two new residents at your apartment complex have settled down. The work you do is voluntary, yet some people are so ungrateful and demanding. There are several retired people in the village who make Michael's job chairing the Parish Council very unpleasant at times.
Have to work down in the, very cold archive this morning.
Keep warm.
Love,
Gill x
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Hello everyone,
After a lot of careful thought I have decided not to post any more on the thread. I have been doing this for over nine years and I think it has served its purpose, which was primarily to bring the UK out of the dark ages, as it seemed to me, concerning breast cancer especially breast cancer with triple negative receptors.
The thread became international and I found that very enriching and interesting and I have got to know some wonderful people over the years.
Looking through the BC forum I get the impression that there are very few Brits on it and as some of you have said a lot of people are posting on Facebook, which is definitely not for me.
Many thanks to all of you and always remember that you can get through your breast cancer journey and you must keep looking forward with optimism and enjoy every day to the full.
Perhaps some of you will continue the thread. If not, Calling all TNs created in 2010 by Titan is a good thread to be on.
Love and best wishes.
Sylvia xxxx
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Dearest Sylvia you have done an amazing job of informing, supporting and befriending so many of us, in the UK and worldwide, with TNBC. I have always felt welcome and warmth from you and the others on this thread. I have engaged here more than any other thread and hope it continues. And that you do post if and whenever it takes your fancy. Although it is sad, Iunderstand and respect your decision. I wish you and Raymond a happy and healthy future. Much sincere love, best wishes always and a gazillion thanks for all you have done and shared. Xxx
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Hello Sylvia,
I shall miss you. You created one of the most informative threads on the site and I've found your information to be both useful and sensible. Nine years is a long time and you answer every post, so I think you've done more than your fair share!
Running through the threads here, I've noticed that many are very slow these days and I do feel that people may be posting on Facebook instead. Like you, I'll never do that.
I shall continue to post for now and see if there is much of a response.
With my very best wishes to you and Raymond. You deserve a happy, long awaited retirement, though there is doubtless much to occupy you both in your voluntary role at the retirement complex.
Love,
Gill X
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Hello everyone,
There's something on the BBC website this morning about not taking herbal meds/vitamins/minerals whilst undergoing chemotherapy. Apparently some of them can prevent the treatment from working properly. The article gives a list of what to avoid. Garlic and turmeric are both on it. My Oncologist advised me to stop taking my vitamin C and turmeric and ginger capsules while having chemo. Some fruit drinks should also be avoided eg orange and grapefruit. Bit late for most of us here, but there may be newly diagnosed women browsing.
Gill X
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hello to Sylvia and all
Well, Sylvia, I think I shall refuse to let you go! At the same time it would be selfish to try and keep you here so I suppose I must. Please do think about popping back in sometimes and/or checking your PMs. I told my sis-in-law I want to to visit England next year, and she was in agreement. One reason was to see you for a visit, and I have to be able to find you. I can see us wandering around Exmouth searching for Sylvia and Raymond!
Right now she is building a house very near her son, son and wife are having twins next month. They already have a toddler. I am hoping my arm will be useable and babies well and off we will go by the time spring shows up.
I am still not using my regular keyboard, which is main reason for my dearth of posting. It just takes too long to peck out the paragraphs with left hand! But my arm is better, it's slow progress.
And in defense of our electoral college system of voting: if votes were decided by popular vote, the urban areas would always come out ahead. We have many states with more rural population, and this system gives them a voice too.
I don't post on Facebook either. I hope you consider making occasional appearance, I would miss you too much! (Like I said, I'm selfish, I guess.)
I renewed my WDDTY, and the format has changed here too.
Once again, it's time to get ready to leave for the therapy center, my semi-permanent home!
Thank you, dear friend, for everything.
Love, Mary
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Hello Sylvia,
Occasional appearances sound good to me too. No pressure though!
Love,
Gill X
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Hello Helenlouise, Gill, and Mary,
I was so overwhelmed by all your kind words and it makes nine years and two months of dedicating myself to this thread so worthwhile. I think we are a group of thinking and informed ladies and we have made a thread of which we can be very proud. It has been both informative and very sociable and we have all got on so well together.
I am very tired at the moment and am going to try to relax over the next few days to see how I feel. I shall definitely answer the last posts the three of you sent.
I have not of course, Mary, experienced voting in your country with the electoral college system but here the first past the post is definitely unfair and everything favours the Conservatives, especially the Toffs, who think they rule through some kind of divine right handed down from their land owning aristocracy.
It is very bad news about our health system from what I heard on the news this morning.
That is all for now.
Take care.
Love.
Sylvia xxxx
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Hello all,
I am fine and was busy with different family problems. Sylvia hope you are fine and keeping busy reading and your helping keeping this thread .I don't have much to contribute but learn a lot from all the wonderful ladies specially Mary and Gill. Here the weather is good and winter is approaching. Please pardon my English.
Love
Jags
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Hello Jags,
I've only been on the thread for just over a year, but feel that I know everyone here so well. All in the same boat really! I'm so glad that we get to hear from women in other parts of the world too - I enjoy hearing about their healthcare, climate, family, politics, not just cancer and treatment. A diagnosis of breast cancer can be devastating and the support, kindness and information here is amazing.
I'm glad to hear that you're doing well and I hope the family problems aren't too serious.
Your English is very good!
Love,
Gill x
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Hello Everyone,
Kath, I don't know how I missed those terrible, awe-inspiring, and sobering photos of the fires when I first scanned the thread, but somehow, I did. It's good to hear that you're ok.
Gill, Thanks for your kind response about my post and my Dad. I agree that Pancreatic cancer is especially appalling. And I always try to remember that worry is not productive. We do the best we can, I suppose.
Mary, I'm sorry to hear that you are posting less because of your arm. I wish you some great trips when you're ready for them, and continued healing.
Marias, I'm so sorry to hear that you're struggling. I'll be thinking about you.
Sylvia, Yes, my schedule remains overloaded. I wanted to let you know that you probably are familiar with arugula, (salad). In the UK I think it's called "rocket," and I like that it is.
As you are, I'm just getting on with it, and trying to enjoy life as much as possible. If anyone understands making choices and making the most of our time, we do.
Of course, with your 14+ years of survival, and your diligent 9+ years of responding to posts on this thread, I agree that you certainly deserve a break. I also agree that occasional post is very welcome if you feel like it. I wonder if your being tired is related to the seasonal gloomy weather.
I will not be posting regularly, but I hope I can check in sometime to see a lovely photo of you and Mary meeting in person. I am reading the Bill Bryson book. And I'm wishing you plenty of time to read good books, learn new things, eat good food, and do the things that you love.
Sending love and warm thoughts to everyone here,
Pam
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happy weekend,
Here it is the first weekend of firearm deer hunting season, this is the unofficial biggest holiday of the year for many here (tongue in cheek), we have a very large supply of whitetail deer here and for the next couple of weeks they will be hunted with firearms. Hunting with bows, atlatls, muzzle-loader is allowed till new year. My husband enjoyed this, I only enjoy occasionally eating the fresh venison when I am gifted some. It is a very lean, tasty meat. Yes, I am still an omnivore, although red meat is a very small part of what I eat.
Dear GILL
My MO told me to discontinue vitamins and supplements while on chemo, he said the antioxidants might be protective of the tumor. As to my shoulder, I can feel it is progressing day by day, still a ways to go. I am just past 2 months post-op, when I get past month 4 I'll feel better; that's when things went south LAST TIME. I'm so glad you are still here, you and Sylvia are such constant friends, I feel. I think we all have times when we are having illnesses, difficult or happy distractions, or are just tired and need a break, and its always wonderful when absent friends come back and visit. Which leads me to........
PAM
Hello! You pop in my thoughts often, if I'm in a bookstore, for instance, isn't that odd? Not sure if I told you, I was in California in mid-June. We were hosted at Pebble Beach for the PGA tournament. Sis-law (also named Pam) is an avid golfer and we enjoyed a couple of days there. Then we took several days and explored; Carmel, Monterey, drove down the coast through Big Sur and spent another day roaming around Santa Cruz, the Boardwalk and redwoods, fresh fish and candy stores. We were staying closer to santa cruz and had a lengthy drive each day to the Golf course. What We Saw Of California's natural splendor was beautiful, they could use some road improvement, but that is true in many places. Our daily drive took us through a valley filled with strawberry and artichoke fields.
So glad to see you back here, even if only briefly!
Hi JAGS
So glad to see you too, I have run out of time this morning and will be back later.
KATH, ADAGIO, HELEN LOUISE
Be safe, be well and I'll talk to you soon. Amazing and dreadful fire pics!
Love, Mary
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Sylvia - your dedication to each one of us on the thread is commendable - your tireless giving of your time and energy do not go unnoticed by us. We will all miss you tremendously - and I personally want to wish you good health now and in the future. I will miss you - my friend from Exmouth - and please do pop in now and again to let us know how you are getting along. Best wishes to you and Raymond. I would love to be able to connect with you and meet you in person if ever we are in England. I certainly understand that you need a break from this cancer stuff. Love always and look forward to your popping in!
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Hello Gill,
I found myself looking at our thread today and felt really overwhelmed about all the kind words from people in our group. I have had a weekend of not doing very much but have been trying to get past tiredness. Somehow I felt cut off from you all. I shall try to answer as best I can but it may not be as thorough as in the past.
Like you I am very concerned about where our NHS is going. It is so underfunded, overused and understaffed. I think the most important thing in all of this is to keep our population under control and make sure people who have not helped with funding should not exploit our system. We are a National Health system, not an International system.
I certainly do not think the National Health system is safe in Conservative hands and I feel that Boris Johnson lacks maturity and seriousness and feels it is all a joke. We need a government like the 1945 Labour Government under Clement Atlee, Nye Bevan etc. Brining in the National Health system and the Welfare State in 1948 was our proudest moment. However, the population was about 40 million at the time and it is now about 70 million.
I agree that Boris Johnson should be banned from all our hospitals and should stay away from the flood areas.
It is so nice to have a group where we all care about one another. Like you, I wonder what is happening to Marias, as well as Hanieh, especially with all the trouble in Colombia and Iran.
I do hope you will soon be rid of your cough. Honey does work wonders.
I do think the problems within our apartment complex has made me very weary. At the moment I am concentrating on getting to the end of the year and having all the accounts finished. The other volunteer Director left last Wednesday en route for Los Angeles, California on November 25th. She is visiting her son who lives there. She will not be back until January 8th.
I can sympathise with Michael. Some people cannot stop complaining and criticising.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
You have been such a special friend on the thread and such a help that I felt I must answer your last post. I shall definitely try to keep popping back in but I may not answer all posts.
It would be very nice if we could meet up in Exmouth next year. at the moment there are major works going on along the sea front, where they are building better defences against flooding. Raymond and I drove along there today and were surprised to find people sitting out eating ice cream. It is very cold here today at 5C.
I do understand the problems you must be having trying to type. Please do not worry if you do not feel like posting. We all understand.
I do understand what you mean about the electoral college and the popular vote. I shall be glad when the election is over, but I do not think it will solve anything. There is too much emphasis on Brexit. It is shameful that we have 20,000 young people living on the streets and we need a programme of mass building of hostels and council houses to take care of them. We have about four million children going hungry and loads of others in care and not being properly looked after.
So far the election has not been very pleasant at all. Boris Johnson does not have the gravitas to be a Prime Minister. Everything is a joke to him, but I find it tragic that slowly but surely the good work of 1945 has been unravelled. It all started with Margaret Thatcher in 1979 when she said there was no such thing as Society.
I feel it is shameful as well that we seem to be at the bottom of the pile with all aspects of cancer treatment. We need to do much better.
It is a gloomy time of year here and not very nice for being in the grounds. I do dislike the long dark evenings and the dark mornings.
Take care, Mary.
Love.
Sylvia xxxx
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Hello HelenLouise,
Thank you for your post and for your very kind words. I am glad to know that the thread has been helpful for you. It is certainly interesting for me to have you and Kath on the thread. I find that Australia is a fascinating country.
Yesterday I watched another episode with Michael Portillo of Great Australian Railway Journeys. This time he was in Canberra and I was very interested to see the lovely modern Parliament building and the old one, which reminded me of some of the heavy architecture from way back when that we have here. I do like modern and minimalist styles.
I shall try to pop in and I do feel that we all need to keep up to date with whatever is going on with cancer and breast cancer in particular.
We need more hospitals here, more doctors, more consultants, more nurses and more specialists of every kind.
I think as a population Brexit has worn us all down.
Take care. When are you off to Japan?
Love.
Sylvia xxxx
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Hello adagio, Jags56, and Pam (lilyp6),
Thank you all for your very kind words. They are most appreciated. I need to do a few other things now but I shall answer later.
Take care.
Love.
Sylvia xxxx
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Hi al
Hope everyone Is doing well? Sylvia I just have to say u are one of the brightest women I have ever had the pleasure to know and your unique calming influence has brought peace and comfort to so many women on this thread. Thank you so much for all ur help and support. I know I’m being selfish but I feel a bit lost without ur guidance
Much love
Kat
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