Calling all triple negative breast cancer patients in the UK
Comments
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Hello Gill,
I have just discovered your post. I was so sorry to read that you and Michael are feeling so unwell. Do you think it is long Covid? Have you tried Robitusin, sugar-free, for the cough? It is very effective.
I am hoping that Raymond will be able to be treated through medication. Our mothers both suffered from heart failuere and were on frusemide, digoxin and warfarin for a very long time. I do hope surgery is not required. I have read that it is common to get heart failure after triple bypass surgery. It is now three and a half years since that surgery. We just soldier on.
I am very sad about our thread. We had some really nice people and it felt a bit like a second home. It was lovely the way we added photographs of ourselves, family and our gardens etc. It is nothing like that now and everything seems too trendy.
I have now completed 18 years since being diagnosed with breast cancer and given a poor prognosis. It is a good job I ignored it and did my own thing!
It will be thirteen years in September since I started the thread and I feel that it is not going to recover now. I do wonder if regular posters have even been able to find their way back?
I do agree with everything you say about Boris Johnson. How did such a clown ever become Prime Minister? I cannot see anyone who has the makings of a leader anywgere in Parliament. I am so disappointed with Labour under Keir Starmer. I do agree that the NHS is finished.
Take care of yourself and let us hope that our lost flock find their way back.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
Gill and I are wondering what is happening with you and the rest of our friends.
I saw what you meant about your name disappearing at the end of your post and cannot understand why it is happening.
Try putting in your full username at the end as there must be many Marys. Try signing off as Maryna8.
I do hope to hear from you soon.
Love and best wishes.
Sylvia xxxx
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Dear Sylvia
I have read, with much interest, your messages over a long period of time, however they appear to end in early June if the dates are accurate. If you remain on this site, it would be lovely to hear from you. I do hope this message finds you in good health.
Many thanks
Claire0606
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Hi Claire0606, and welcome.
Sylvia posted on June 25th (-: ( See above).
Warmly,
The Mods
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Hi Claire
I am often here as well, not much lately but hopefully I will be back more.
I'm pretty sure Sylvia will return soon.
Maybe you could tell us a bit about yourself. We used to have a lot of our details under each of our posts but I haven't figured it out since the site got redone.
I will be back here soon welcome!
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Hello Mary,
Thank you for your email and for your response to my question. I did not realise that you could read posts on this forum without being a member and without signing in. It seems odd to me and lacking in security. It leaves us all quite vulnerable and in today’s world I think we all have to be very cautious about what we are doing.
I was glad to know that all is well with you. As for the heat I think we are all fed up with it.
It will be good to see you back on the thread regularly.
Thank you for popping in to welcome Claire0606 to our thread and are asking her to tell us a bit about herself.
As you point out, we used to have details under each of our posts and I think they need to be put back, along with our avatars and any personal quotes we made at the time. They were like our signature tune. I sincerely still believe what I wrote at the time. Let your food be your medicine and your medicine be your food.
I have, as of Friday June 20th passed 18 years since diagnosis. Triple negative breast cancer was not named. I was just told I was non-hormonal, that tamoxifen would be of no use to me and that the prognosis was poor! I chose to ignore this and here I am 18 years later!
It is disappointing that we seem to have lost our friends from the group in this technical merry-go-round! Let us try to find a way to get them back if the new format has confused or discouraged them. I am wondering what has happened to Sue, the teacher in America, and to Kath in Australia, among others. I often wonder what has happened adagio in Vancouver and also to InspiredbyDolce (Debra) in the US. She always had such interesting things to say.
That is all for now. I am longing for rain here to bring the grounds back to life. We are not getting very good marks in the UK for every aspect of cancer care. We need to do much better.
Love and best wishes.
Sylvia xxxx
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Hello Claire0606,
Thank you for your post. I was pleased to read that you have been viewing our thread for a long period of time. It would be nice if you could tell us what your story is.
I do not understand why you could not find my posts after early June. It seems the new format of this forum may have a mind of its own. I do hope we can find a way of making it more like our original thread and make it more homely. Technology is getting way too sterile and devoid of personality. I have noticed lately that any personal post from our mail system has letters with no signatures, just trendy words such as The Team, The Hub and over familiarity and use of spoken abbreviated English, something we were taught at school never to use when writing, such as you’ll instead of you will.
I am very well and proud to tell everybody in this forum that I have now reached 18 years since diagnosis. I created this thread in September 2010 so it has been going quite a while.
Sending you very best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your email. I do wonder about what is going on, so let us see what transpires.
I was glad to know you will be back on the thread before the end of the week. Perhaps you, Mary and I can get our thread back to ‘normal’ again. With all that is going on in the world, especially in the UK where we have nothing but bad news, we need somewhere where we can have some sane moments!
Love and best wishes.
Sylvia xxxx
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Hello Mary, Gill and everyone else,
I decided to go to Active Topics and look at the instructions at the top of the first page and try to follow them. I succeded in most of it and have been able to add to this post all the details of my treatment, diagnosis and the rest and they have now appeared at the bottom of my post.
I did not succeed in finding the original photograph that I posted on the thread when I started Calling all triple negative breast cancer patients in the UK back in 2010. Obviously I am not very happy about that.
I found the instructions unnecessarily confusing and did not like the fact that they were muddled by the presence of 'adverts'about what to find on the forum.
I also did not like the fact that the number of posts since 2010 were accurate, about 7,000+, BUT the number of views was way way below the actual number viewed since 2010. They have put about 2000+. This is absolutely ridiculous as they were about 35,000+! I gave a great deal of my time trying to encourage and help people going through triple negative, from all over the worls in actual fact, and that has been deleted by a click of a button! This is very unfair and very hurtful.
I hope others will try to re-instate their details and please tell me if you manage to re-instate your avatar (photograph).
Exasperated of Exmouth!!
Sylvia xxxx
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Hello everyone, especially May and Gill,
I decided that I was going to get my avatar (photograph) back on the thread come hell or high water! I have ythe photograph in question so I got Raymond to trim it up and post it back on.
On the first page of the active topics about five lines down I noticed that someone had started a thread about her mother diagnosed with triple negative at age 74 and not wanting treatment. You might find this interesting and there are quite a few posts. Please have a look. It makes me remember how I did not really want treatment, delayed for three months and then strted treatment but also took some alternative treatment.
I shall tak again soon.
Love.
Sylvia xxxx
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Hello everyone,
I thought you might like to see some of the shrubs we have around the apartment complex where I live. In spite of the lack of rain they have managed to deep-root to find water.
Love
Sylvia xxxx
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Hello Sylvia,
Your plants look remarkably healthy, I'm afraid that many of mine are still suffering from the effects of last year's draught. I have to be careful with watering as I'm not on mains water here.
I noticed that your avatar was back up. Well done! The website is now so complicated and clunky, I doubt if many others will bother.
I've been thinking about long covid in regard to our seemingly never-ending chest problems and coughs. Michael and I have had three of these viruses since October and neither of us have had bronchial problems before, just the usual coughs and colds and then only once a year at the most. We've both been coughing more than normal ever since our bout of covid. I'm afraid so many people have been weakened by covid and I doubt if the full impact will be known for at least another decade
I do occasionally look at other threads here, not as much as previously, but I did notice the lady who was reluctant to undergo treatment. I'm not sure about this. For myself, I would have chosen immediate surgery and then stopped. Chemotherapy does far too much damage. Of course that's just me and triple negative breast cancer does respond remarkably well to chemotherapy. The opportunity for quick surgeries for cancer is vanishingly small in the NHS now that there are over 7 million people on the waiting list for various operations. I know that more and more people are paying. However, mastectomy and lumpectomy are quick and straightforward surgeries. Not many of us could afford to pay for the more complicated and time consuming operations plus recovery time in hospital. What a mess the country is in.
I hope Raymond's medication will make life easier for him. I had no idea that heart failure was so common after bypass surgery. I expect this will mean more hospital appointments, let's just hope that travel for patients without transport is addressed. Paying for long taxi journeys isn't an option for people trying to keep their heads above water during a cost of living crisis. I'm probably being too cynical, but forcing people to travel long distances to hospital appointments will certainly cut the waiting lists.
It's good to see Mary back on the thread. Perhaps Kath from Australia will drop in soon.
Take care of yourself Sylvia and please give my best wishes to Raymond.
With much love,
Gill xxx
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Hello Gill,
Thank you for your post.
As for the shrubs in our grounds, I was amazed to see how good they look, because we have had virtually no rain all through June and we have done no watering because the grounds are too big. I think the shrubs have gone deeper and deeper looking for water. It also amazed me how much everything has grown in the heat and drought. We are not planting any summer flowers this year and are waiting for rain to soften the soil to did it over a bit.
It is not difficult to get your details back on the thread. If you go to page 1 of Active Topics and follow the first lines there by the Moderators it is not difficult. I think those who want the thread to continue and somehow integrate with newly formed threads about Triple Negative, that is the only way to go or else we just give up.
Do you happen to remember adagio’s new identity? If so, I can try to send her a Private Message.
If we want to survive we need to keep our thread and Calling all TNs on the first page of the active topics.
I value you your advice so let me know what you think.
I tried yesterday to get All Topics back on the format that was easy to follow and covered all the forums with their threads. I could not find it anywhere.
I was sorry to read that you and Michael are having such problems post-Covid. It seems that many people are suffering from long-Covid. Perhaps you could both benefit from a complete check-up.
I do not think that the NHS can survive all this, not in its present form. It is trying to treat too many people. I think all of our problems are due to over-population. This little island is not meant for all these people and it is creating more and more problems because there seems to be no intention of controlling this population growth. Our Prime Minister is in dreamland with his promises of a miracle within fifteen years. He has not even been elected by the people.
Raymond and I went to the RD&E on Tuesday for a pacemaker check up. It was all very tiring. The hospital was busy with people walking around everywhere and felt more like an airport. Fortunately we have access to a community car service to take us to and fro. It is a lot cheaper than a normal taxi service. We have to go back on Monday for Raymond to have an echocardiogram and a talk. It is at a Community Hospital Cardiology Clinic, about which we know nothing.
I have noticed that the person who posted but gave no details has not responded to our posts.
That is about all for now. I think you are probably right that we shall not be able to get our thread back to normal.
Love and best wishes to you and Michael.
Sylvia xxxx
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Hello Sylvia,
I've just written a lengthy response to you and it's disappeared. So frustrating.
A quick summary - I think adagio became deltag.
I doubt if the thread will recover, though there may be new posters from time to time, I'll keep my eye out. The strange comment appears to have been a one - off as the author seems to have disappeared.
I hope Raymond's echocardiogram didn't show any new problems. Apparently, cardiology is short-staffed almost everywhere outside London. I wonder if your talk on Monday was with a cardiologist? These community clinics seem to suddenly appear and disappear all the time these days. What a mess the Tories have made of the NHS.
Michael and I still have a cough and I'm short of breath after the last virus. Covid appears to have damaged so many people and it's not just breathing problems. New information about long term/permanent damage is coming to light all the time.
Apologies for this very short response. I'm going to search to see if my original post has been saved somewhere.
Take good care of yourself Sylvia. Please give my best wishes to Raymond.
Love,
Gill xxx
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Hi Sylvia and Gill
Glad to see the flower pics looking so beautiful, and healthy. We have been unnaturally hot and dry and it seems all I do is string hoses around trying to keep a few things alive. That activity pleases the moles who like to burrow in the soft ground, and the deer, they nip off the green tops and flowers on the things I water.
April was taken up by my trip to Europe, and my bout with Covid, since then I've been home battling against the weather and the problems with maintenance of an older house. And also the house on the farm, a 110-year old house.
I have read a few things about research being done on TNBC. When I think about it, there have been a lot of new drugs being used, and maintenence drugs. As Gill was saying, none of these are a picnic. While I can't go back and undo things, sometimes I do wonder what would have happened if I hadn't undergone all those infusions of high-dose very harsh drugs. But it's all hind sight now.
I like seeing your pic, Sylvia and your signature again! I'll have to finish my work on that one of these days!
There are also cancer drug shortages here. The craze now is for the weight-loss drug that is for diabetics, but people who just want to lose weight can get it but have to pay for it, to the tune of $1200-$1500 a week!
I have a friend who is doing that, and another who is diabetic taking the shots. Her shot is paid for by insurance. Supposedly it has no side effects.
we had a small amount of rain yesterday so i may not have to water anything today, yippee!
Talk later, love, Mary
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Hello Gill and Mary,
I have just read your posts and was so glad to hear from you.
I have been occupied with many different things but I will reply in the next day or two. I shall tell you about the visit to the so-called neighbourhood hospital. It was tiem consuming.
I do hope Gill that you and Michael will slowly get better.
Mary, what a busy time you have with your home and gardens. Just take care of yourself and do not overdo things.
Our two countries are going through strange and difficult times. if only we could find some strong leaders.
I wish we could hear from deltag, Kath and Sue the intersting school teacher.
Love to you and talk soon.
Sylvia xxxx
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Hello Mary and Gill,
I am sorry that I have not been able to get back to you. I find myself with little time to spare. I am looking after Raymond, who was told after a visit to the Cardiology Clinic, somehow attached to the RD&E Hospital, that he has mild heart failure and to continue much as usual. We were not impressed with the clinic and much of it was a waste of time. The useful part was the echocardiogram, but we would have preferred to get it at the RD&E. Much of the rest was a repetition of what the GP had already done, taking blood pressure, weight and examination with a stethoscope and an ecg. It was all very tiring. The latest thing seems to be pushing an off-patent diabetes drug for heart problems. I am also looking after a brother and a cousin.
Life in the present UK we find absurd and the think the country in which we grew up has vanished. Nothing works and technology is out of control.
Thinking of you both and sending love and best wishes.
Sylvia xxxx
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Hello Sylvia and Mary
My apologies for the very late response to your kind messages. I did intend to write sooner however, whilst I initially received relatively good news that there was no evidence of spread outside my breast and nodes, I have now been advised that it has and I have been struggling to accept this.
I am so very happy for you Sylvia on your 18 years disease free; so encouraging in midst of other experiences relating to this ghastly disease.
Apologies again for not replying much sooner.
Kind regards, Claire x
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Hello Sylvia and Mary,
I've been snowed under with work at the archive and meetings. I know you're in the same boat Sylvia. I'd really like more time for myself as life seems to be passing me by.
I have a deer problem too Mary. I have to grow shrubs that are toxic to deer and rabbits or I wouldn't have a garden left. Sylvia's plants look a lot healthier than mine. The draught did a lot of damage here, large patches of lawn died off and weeds moved in. I wish I had someone to help with the garden. Michael isn't a very keen gardener to say the least.
Sylvia, I'm sorry that most of your time was wasted at the new cardio unit. I guessed that would be the case. These new community units are put in place to make patients think they are being properly looked after. There's a shortage of cardiologist and long waiting lists even for private surgery in many areas. At least Raymond got his echocardiogram done. I hope that offered some reassurance.
A friend near St Albans had triple negative breast cancer about a year before me and has just had her final consultation with her breast surgeon. She's had regular annual check ups for five years, as has everyone I know who lives someone other than Norfolk. This postcode lottery is outrageous and leaves some of us feeling very vulnerable.
I'm sorry you had covid in April Mary, Hope you haven't been left with any long term weakness. Michael and I have had 3 chest infections since our bout of covid last year. I don't know if covid left us more susceptible to lung problems or if we've just been unlucky.
Our NHS is all but destroyed by the Government. Doctors are being forced to leave as they can no longer afford to pay their bills. Our useless Health Secretary has offered them a pittance of a pay rise. Never have we had such a corrupt Government in power. I don't think the country will recover in our lifetime. We are now the sick man of Europe, our economy broken and isolated from our former trading partners and friends. It's all so depressing
It's late, so I'll sign off here. Keep well and remember to spare some time for yourselves.
Love,
Gill xxx
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Hello Claire and Gill,
It was so good to receive your posts. I am so glad to see signs of life, because I was so proud of what it had become and how interesting and friendly all the posters have been. I have posted a PM to adagio/deltag, our much valued Canadian friend. If only we could send out an SOS to our friends worldwide.
Has anyone got any ideas?
Claire, please do not give up. We are here to help and you can get through this. I have a friend here in Exmouth who has been living for years with metastses. It would be helpful if you could give us more details about what is being suggested to help you. My friend has been dealing with her breast cancer for over twenty years and is still going strong.
Gill, I shall write more later, but please give yourself some time and get gardener to help you. The latest thing for me is that my brother here in Exmouth is in hospital, the RD&E. He was hit by a car on the busy Salterton Road that goes through the east part of Exmouth to Budleigh Salterton. I have spoken to him today and he is in a lot of pain. Nothing seems to go well lately!
Ah, the greater conveyor belt of life trundles on, never stopping on its journey!!
I see that Radio 4 is in Norwich today.
I hope to be able to talk more tomorrow.
Love and best wishes to all.
Sylvia xxxx
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Hello Sylvia,
I do hope you will give yourself some breaks. Looking after your cousin when he's so far away must be very stressful and now you have your brother in hospital! Is he being well looked after? Hospital treatment is a bit hit and miss these days with staff shortages getting worse every week. I can't say that I blame the doctors for striking. Their wages and working conditions are appalling.
I spent most of yesterday in the back garden, pulling up the bindweed, ivy and stinging nettles that come through the hedgerow from the fields. Managed some digging too. I overdid it and feel absolutely exhausted today. I only wish there was an affordable gardener we could have for a few hours each week. Unfortunately they are horrendously expensive here and in very short supply. At least we don't need to do much watering at the moment as there's a shower every other day here.
I do think Kath might drop in soon. I know she had a lot of work to get through last time she was in touch, but she usuallycomes back for a catch up now and then. Adagio might call in now that you've sent her a private message. It isn't just this thread that's suffering, posts on other threads have fallen too. I'm not sure why, but covid didn't help, though logically you would think that lockdown would have increased the numbers here.
Have a peaceful weekend Sylvia. Please give my regards to Raymond.
Love,
Gill xxx
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Hello everyone-
I particularly wanted to reach out to Claire. Her last post touched my heart about finding out that she may have cancer in other sites. I have been doing some reading mostly because I have been dealing with kidney stones, last summer I had to have surgery for a stone that was blocking my ureter ( tube from kidney to bladder) well that was resolved but then I began having repeated UTI that took multiple rounds of antibiotics to clear up. My urologist had suggested that I start taking Mannose D along with vitamin C which I have and luckily I haven’t been bothered by infections for quite awhile. I wanted to read about Mannose D to see if it was safe to take and lo and behold there have been some studies using Mannose D and TNBC. Have any of you heard about this? I will copy the articles I read. My understanding is that when it is absorbed by the cancer cells it opens those cells so they are much more vulnerable to the chemotherapy and makes it more effective at killing those cells.
I also came across another article about a vaccine for TNBC but I can’t seem to find.0 -
https://www.science.org/content/blog-post/mannose-and-cancer
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I know these aren’t studies in humans but I’m hopeful
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Very interesting pkville - I seem to remember that you're Paula, my memory doesn't get any better!
I was sorry to read about your trials and tribulations over the past months. Kidney stones are so painful, very glad that yours was successfully dealt with. Let's hope you've seen the last of those UTIs too. I wonder if the infection was the result of the kidney stone removal.
Claire, if you're still reading the comments here, pkville's information from the study regarding mannose sugar seems to be worth a read. I do hope you're feeling more hopeful now and that your medics have informed you about the treatment that's going to be offered. Remember that triple negative breast cancer has an excellent response to chemotherapy. Good luck.
Wishing everyone a peaceful week ahead.
Love,
Gill xxx
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Dear Gill,
Yes I’m Paula, thank you for remembering! I read that you and Michael haven’t been feeling well? I came down with COVID in May and I have to say that I was feeling pretty poorly, and it took me a good month to clear up the residual cough and mucus. It’s hard to know whether I suffered any long haul effects from it. I am pretty tired most days but I’m also still working, have 3 adult kids and have 6 grandchildren that I’m pretty busy with so I’m not a spring chicken anymore but I do love going and helping when I can!
Paula
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Hello Paula, Gill, Claire and anyone else who may be viewing,
I have had a quick read of all your posts but just have no time at the moment.
I have now gone over eighteen years since diagnosis and it seems a lifetime ago. I am still not at ease with this new forum and am not happy that the number of views and posts do not count from the original number. This is not fair to all those who posted from the beginning and made the thread the success that it was.
To the newly-diagnosed, always have a positive attitude, no matter what you are told. I was given a bleak outlook but took no notice.
Love and best wishes to all.
Sylvia xxxx
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Hello Gill,
Thank you for your post of July 21st.
It is challenging with my cousin but I have a lot of patience and it is very interesting and a great learning curve. I did a diploma in Social Work when I was in Canada, but that is a long time ago and involved a lot of reading and essay writing. Since then and over the years I have befriended lots of elderly neighbours and so have had a lot of practical experience.
As for my brother, things have not seemed too bad. He was in the RD&E for a week and then transferred to Exmouth Hospital in the spirit of using Community Hospitals. He was lucky to get Exmouth because everything has to match up with transport availability and beds availability. I did not think beds were still available in Exmouth, according to their website, but they do in fact have sixteen beds.
Like you, I do not blame doctors for striking. They have not been treated properly. I do hope we shall get a new health minister. The present one has no warmth or understanding.
It sounds as though you did some very heavy gardening. I do hope you managed to find a gardener, because it is not good for you to get exhausted.
I do not feel very optimistic about Kath dropping in now. Using the forum is very frustrating and confusing. There is something so impersonal about it. Today, when I tried to log in, I was faced with something saying You are obviously new to the forum, so I had to go through that rigmarole.
I have not received any answer to my PM to adagio, even though I put in both names. I do hope she is alright because she was going through a lot.
I do not think the thread or indeed the forum would have suffered this much without all this change. I am very upset about our thread. I joined the forum about 2009 when I was looking for information about a possible connection between breast cancer and an overactive parathyroid. I met up with Sam52 and we went through surgery about the same time for an overactive parathyroid. This takes calcium from your bones and leaks it into your blood. Calcium in the blood also indicates metastases. Fortunately my oncologist carried out a test and diagnosed an overactive parathyroid, which can put you into a coma and is very dangerous. My breast cancer surgeon was also an endocrinologist and she did the surgery in 2009 when I was very much recovered from my 2005 breast cancer.
I was posting in the beginning in 2009 on Calling all TNs and was inspired by Titan who started that thread. It is still going but is not as active as it was. Calling all triple negative cancer patients in the UK was started by me after posting on Calling all TNs.
I do remember Paula, but she may need to repeat some of her own breast cancer details so that anyone posting can be more in touch. All this was the beauty of our original thread.
I need to look up about Mannose D and TNBC. I have not heard anything about a vaccine for TNBC. Given all the trouble over Covid and vaccines, long Covid and deaths, I am a bit cynical.
Raymond sends his best wishes. He is having a difficult time at the moment. He has been told he has mild heart failure and to take an increased dose of furosemide for possible oedema. Unfortunately it also lowers blood pressure, which he does not need. He has always had normal blood pressure and was already having problems with his beta blocker for the heart also lowering his blood pressure. I think the NHS needs to realise that one size does not fit all. I also think that the oedema may be lymphoedema and diuretics are no use for that.
Best wishes to you and Michael.
Love.
Sylvia xxxx
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Hello Paula,
I am trying to reconnect with you. I was sorry to read that you have been dealing with kidney stones. Raymond had them many, many years ago and I remember how much he suffered.
I was interested in what you said about Manose D and TNBC.
I was concerned about vitamin C, especially if you are taking high doses. Raymond was pretty sure that high dose vitamin C had caused his kidney stones.
Take care of yourself and keep in touch. Try to put your details in if you can.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I am posting to say that I do not think it is right that the number of views of a thread have only counted since the new form of the forum started. It is ludicrous that our thread has been put down as with the number of views lower than the number of posts.
The comments, by which they mean the posts, are down as 16,520 and they have been counted from the beginning.
This is very peceuliar counting and is not acceptable.
Imagine if our governments did that with votes and paying tax!
Perhaps the Moderators could very kindly change it. I do not like this New Arithmetic!
Take care all of you and always remember to be alert to what you are being told.
Thinking of you all.
Love and best wishes.
Sylvia
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