Calling all triple negative breast cancer patients in the UK
Comments
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Hi Gill again,
You commented on the divorce in my family. It is very difficult, I was very fond of the husband and feel I have lost him. My niece is living with my brother and wife in their downstairs apartment. They don't talk about anything meaningful in my presence anymore, its all God's will. Which is fine but I still like to feel I am part of the family. The holidays will be strange, or even stranger than they already are.
My dog was never a chewer of shoes or furniture, but he does tear all his toys into rags. I tell him he looks like a poverty-stricken dog with his ratty toys. But I still get him a new one occasionally just to watch him tear into it.
I'm off again, talk later, let me know how booster goes.
Mary
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Hello Sylvia,
I agree that it's completely wrong that we are handed information about our vaccination post event. We could easily be given a list of chemicals involved and possible side effects to read online when we make our appointment. This would at least give us time to do some research. Informed consent seems to have become a thing of the past. When you and Raymond queue for your Covid booster you'll probably notice that social distancing is a thing of the past! The volunteers do their best but people seem determined to ignore them.
Three days ago The Guardian printed an article about the link between the fatty acids contained in palm oil and the spread of cancer. I've long been appalled by the vast number of everyday foods that now contain palm oil, it's very difficult to avoid. I hope that scientists will continue to research the issues around it. Perhaps we'll to see it banned in the near future, not just for environmental reasons but for the newly discovered cancer link.
As for the growing array of drugs used in breast cancer treatment, I'm sure that they do have a negative impact on patients' health in many ways, but they are also keeping women alive and improving their quality of life. I'm thinking of our friend helenlouise's experience. Helen's back at work and enjoying life after her almost record breaking list of treatments - which still continue. Despite this, I don't think women in the UK are being fully informed about the side effects of cancer treatments, there's very little time for us to ask questions and the books we are given to read immediately following diagnosis are ridiculously short on science and designed mainly to reassure. I find this inadequate and patronising.
Those managing NHS hospitals and the Ambulance service are shouting from the rooftops that they're no longer coping and people are dying as a result. Johnson is pointedly ignoring their pleas. This isn't Covid, it's a deliberate running down of our NHS. There are still some decent Tories left in Parliament, especially among the new backbenchers, they need to act and get the Prime Minister and the entire Cabinet out before it's too late.
Keep well both of you and enjoy your weekend.
Love,
Gill xxx
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Hi Mary,
I'm sorry to hear that your friend is so ill and struggling. Someone with diabetes and only part of one of her lungs left surely needs to be monitored during Covid. Hospitalisations of people with Covid have dropped here, though infections have risen. Vaccinations have definitely saved lives, but immunity is waning fast amongst those who had their shots 5 - 6 moths ago and not everyone is taking up the offer of a booster, though everyone I know has done so. I'm fully expecting another booster in six months time.
Covid seems to have broken up communities as so many social activities have been cancelled. We were supposed to attend a quiz evening with supper at the Cathedral tonight, but this has been cancelled as so few tickets were sold. The fear of Covid has caused people to become apathetic about community events it's as if they've become used to staying at home. This is devastating for the many people who live alone with no family or friends nearby.
I went out for lunch with a group of hospice volunteers, mainly nurses, yesterday. We were all fully vaccinated and it felt very safe. We had so much to catch up on that we just sat, talked and ate too much for 4 hours. It helped me to feel human again, I hadn't realised how introverted I'd become and how much I needed my old social life back.
As for your sad family situation, families are odd. Being shut out from conversations about a niece and her husband who you obviously care for is cruel. Divorce and Catholic doctrine cause so many problems. Divorce seems to equal shame and secrecy and family rifts. The Catholic annulment process is horrendous and should have been dropped years ago. Couples who might have remained friends following divorce are torn apart. Legal divorce is hard enough to get through, but nowhere nearly as personally intrusive as a Catholic annulment. Your niece may find your help or different perspective on the situation helpful. Parents aren't always the best people to advise. Perhaps you could write to her?
Good look with the Choir and getting your booster shot.
Much love,
Gill xxx
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Hello Gill,
Thank you for your latest post. I was not happy to receive the flu leaflet after the event! On the little chart about what the Fluad Tetra contains I saw that it has H1N1, H3N2, Washington like strain, Phuket like strain, and for eah of these it says 15ug HA and for HA it says haemagglutnin and there is a whole list of adjuvants.
I am not looking forward to going for my Covid booster. I am very lucky to have two friends who are both retired nurses. One of them phoned me this morning to catch up on our news and she told me that a friend of hers made an appointment for her booster, thinking she would have Pfizer, only to find out just before being given it, that she could only have the Moderna. Apparently she has not been very well after having it.
I do wonder what exactly is going into all these vaccinations. I just do not trust the establishment. With all that is going on in this mad, chaotic world of ours, they could well have mind control chemicals to make us all compliant. Me, cynical?
I was interested to read about the article in The Guardian about fatty acids in palm oil and the spread of cancer. We shall just have to wait and see if there is any follow up.
It is true that women are being kept alive on drugs, especially those with metastatic breast cancer. One of my friends here started her cancer journey about 2001. After some years it spread to the bones an she has been on different medications ever since with breaks in between to give her body a rest. She has always been on a good diet and is forever walking or cycling and she has run quarter marathons. Her journey has been with hormonal breast cancer but negative with HER2.
I am still regularly looking at the Active topics and they run to just two and a half pages these days. A lot of them are obviously about metastatic breast cancer. It is useful to have a look at them to find topics for discussion, because we have to keep in mind that the forum is for breast cancer.
At the moment everything seems to be about climate change, but I think the coronavirus should still be at the top of our list and the problems with our borders, not just here but in Europe.
At least I think people are beginning to see through our Prime Minister.
I must say that of course I do agree with what you said about HelenLouise. I do hope she will be in touch one of these days.
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I was talking to my hairdresser today and she mentioned that some people here are being given Moderna boosters now. Her colleague had Moderna last week and is off work due to side effects. There's evidence to suggest that Moderna produces more antibodies than Pfizer so this could explain her being unwell. For myself, I'm not sure about mixing vaccines and was relieved to have been offered Pfizer again. When I had my first jab the volunteer on the door told me that Pfizer was being given on that day. No one told me anything this time until I was sitting with the nurse waiting to be injected.
Like you, I often read through the different threads here. I'm amazed by the number of check ups that breast cancer patients are given in America. Regular blood tests, scans, MRIs if there are any queries regarding unusual pain etc. I wonder, do you think the insurance based system in America leads to too many checks and perhaps overtreatment or are we being shortchanged in England? I don't want to be forever attending hospital appointments, but I have concerns about patients here being followed up for only two years. Annual mammograms are still scheduled for five years, but mammograms are not always to be relied upon, as I discovered. Also, with the confusion in our medical records, we cannot be sure that the results we are posted are actually our results and not someone else's. I was sent a letter informing me that my result was clear three weeks before I'd actually had my mammogram last year! It's all such a mess. I think breast cancer departments are too complacent and over confident about patients' ability to check for signs of recurrence - lumpy scar tissue may be hiding a small tumour, while breast pain, common long after surgery, can also signify something more concerning.
I hope that anyone looking through the thread realises that we welcome posters from all corners of the world. That used to be obvious when we had regular comments from America, Canada, Australia, Colombia and so on, but maybe it's not so apparent now. It's so useful to learn what breast cancer care is like in other countries, we can learn so much from each other.
That's about all for tonight, it's been another long day.
We're having surprisingly good weather here for mid-November, hope the sunshine has reached Exmouth.
Keep safe and well.
Love,
Gill xxx
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Hello Gill,
I shall let you know how Raymond and I feel after we have our booster vaccination on Tuesday afternoon. I have a strong feeling we are going to get the Moderna. That seems to be what is happening lately. Like you, I am not happy about mixing vaccines. Who knows what is really happening inside our bodies? I am very suspicious about why AstraZeneca has disappeared off the scene as it was a traditional vaccine. As for Pfizer, are they running short of it and are there hidden problems? In this country everything seems to be a mess. Recently, young children seem to be getting the virus and not being very well with it.
As for the difference with the two health systems, I tend to think that in the US there seems to be overtreatment and here in the UK under treatment. At the present time, in the UK, I think the main problem is shortage of staff on the front line, and money going in to the system being used to create yet more layers of bureaucracy. We have too many administrators and not the real people. Raymond and I are sure that our medical records are not correct and they will never be straightened out.
It looks as though we are not getting many posters again. As you say, we need those posters back again so that we can compare what is going on in different parts of the world.
I do think we need a general election. Parliament seems to be in a muddle and not really dealing with the serious issues such as uncontrolled immigration and the coronavirus, not to mention transport and housing and the inequality in our country. I think the Glasgow jamboree was a complete waste of time.
That is about all for today. I do hope adagio is alright out in Vancouver with all the flooding. I have now gone 16 years and 5 months since diagnosis.
Love and best wishes.
Sylvia xxxx
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Sylvia, you need to start your own YouTube channel. Do a video once or twice a week talking about all the stuff you read and know about, or whatever you like. We'd all tune in for sure.
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Hello Debra,
It was nice to hear from you.
I was interested in what you had to say about YouTube channel but I do not think I want to start up anything new at this point in my life. I am trying to get some time to myself which seems more and more difficult. Do you do anything on YouTube? I know that it is the technological age and a lot of people are taking part in all different sorts of things on Social Media. It was not part of growing up for Raymond and me, although Raymond was very much involved in computers way back when at a time it was all new. Raymond was also very much involved in the original research for digital television. I started using the computer for research about 1998 but really got involved when I decided to start this thread. I discovered bc.org when I was looking for a connection between breast cancer and an overactive parathyroid gland. I have been dedicated to this forum since 2010 and like it because of the Moderator aspect of the running of it. I do not think I would stray from here to join other Social Media.
I think we are all taken up with the coronavirus at the moment and it has taken up two years of our lives. While this has been raging the world seems to have gone quite strange and all sorts of things are going on that it is difficult to understand.
I know from the quality of your posts that you are informed and always have something interesting to say. What are your feelings about NHS health care and the American insurance based one?
Post when you can, keep safe and keep well.
Love and best wishes.
Sylvia xxxx
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Sylvia, Hi, I have been off the board for a few years, and just wanted to pop in and say hello! I am so glad to see you here, so glad you have given so many women hope by heading up this thread. I am 8 years out from a TNBC and IBC diagnosis, and 7 years out from end of treatment and still NED, thankfully! Hoping everyone here is able to have a good evening!
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Hello Sylvia,
Thank you for your post. I'm as confused as you are about which boosters we are being offered and why. I haven't heard of anyone here being offered Astra Zeneca as their booster. It may be that our supply of Astra Zeneca has been exported to those countries unable to fund their own vaccinations. Most people who were vaccinated more recently than I was seem to have been given Moderna. Whatever you and Raymond are jabbed with, I hope the side effects are minimal. I think it's unlikely that you'll get away without any at all though.
I don't see much in the press about breast cancer, except when another celebrity announces that she's just been diagnosed. I was speaking to a retired nurse who used to work in the chemotherapy unit and was utterly amazed that she knew nothing about breast cancer subtypes. You would think nurses working in oncology would be better informed! It's bad enough that women in general know so little even after being diagnosed. Perhaps I just like to feel that I'm in control and knowledge plays a huge part in creating a sense of control. Having an idea of what your treatment pathway will be, the impact of treatment and the likely effectiveness for your particular subtype is more important than ever now that the NHS is falling apart. Operations will be postponed until it's too late and corners will be cut. A friend who was diagnosed with breast cancer in July still has no treatment plan. She's over 70 and I can't help wondering if age is now becoming a deciding factor. I do hope I'm wrong.
I listened to yesterday's Social Care Bill debate. Matthew Hancock had the nerve to make an appearance! Him aside, it was a well mannered debate with both sides of the House pointing out the obvious flaws and their disappointment that the poorest people stood to lose the most, while the wealthiest would lose the least. Nineteen Tories voted against the Government and there were many Tories who abstained, including Jeremy Hunt. I think the House of Lords will throw it out.
I also listened to the Prime Minister's Peppa Pig speech, his car impression and the fantasy about bringing his ten commandments down from Mount Sinai. - thus offending Christians and Jews everywhere in one swift world beating hit. Shocking even by his standards.
It was good to see posts from Debra and Meadow who you'll remember from years back. I'm a newcomer by comparison.
Keep well both of you.
Love,
Gill xxx
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Hello Meadow,
I was so pleased to see your post and I wanted to say thank you so much for popping in to say hello.
It was so good to know that you are now eight years out from your TNBC and IBC diagnosis and seven years out from your end of treatment and still NED. Posts like yours are so important to patients who are in the process of going through their treatment. A diagnosis of breast cancer always sends us into shock and frightens us while we wait our treatment. To hear from other patients that they have got through it all will help them so much.
I hope you are living life to the full in these difficult times of coronavirus. I am about to go off to get my booster vaccination.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I am just preparing for the trip to get the booster jab. What you said about AstraZeneca is exactly what I have been thinking about it and that it has gone to the poorer countries. I am going to try to ask about this if I can. I am worried about this mixture, especially as it was mentioned on Radio 4 today that AstraZeneca was better than the others. It was mentioned that it was a traditional vaccine, as we already knew. I remember Chris Woollams talking about it when he said that we should not be mixing vaccines. This morning it was stated that AstraZeneca gave more protection and produced more T cells.
I shall write more later on today, vaccine willing!
I did not see all of the Boris speech, but enough to realise that he needs to go. His speech papers all appeared to be mixed up, so we had the Peppa Pig story.
What was all that about coming down from Mount Sinai?
More later.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Raymond and I are back from having our booster vaccination. It was all very fast, efficient and straightforward. We had the Pfizer and there was no choice. I did say that I had had the AstraZeneca for the first two and asked if I could have it for the booster, and was told no. I was told that the choice was Pfizer or Moderna and that today they were doing just Pfizer, so I had that.
Raymond and I looked online to see if we could get an answer about why AstraZeneca was not being used for boosters, but we could not seem to find an answer. It seems to us that the traditional vaccine is just out of favour. The RNA vaccine seems to be the flavour of the month. This is a bit odd because the government loves to boast how we are doing better than Europe because we got out the AstraZeneca very quickly and it worked 'miracles'!
We both feel fine, but it is early days. Watch this space.
It is true that we do not hear much about breast cancer these days and on the forum it seems to be TNBC when someone is diagnosed with hormonal negative status with their tumour and little mention of the type of cancer. To me the type of cancer is very important especially when it is one of the less common types. From what you say in your post, it would seem that some nurses in oncology are not that informed. I have always said that patients should be one step ahead of their medical team. It is important to be an informed patient and ask questions.
You are right about the Social Care Bill debate. It is common sense the way it is explained that the poorest people have the most to lose.
I was very pleased to hear from Debra and Meadow. We need to hear more from long-term survivors.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I do hope that you and Raymond have had a good night's rest after the booster. My side effects didn't kick in for two or three days. Fingers crossed that you'll experience nothing more than a slightly painful arm.
According to the local newspaper, our hospital breast cancer department has recovered from it's dismal reputation as the worst in the country and is now seeing hundreds of breast cancer patients!!! It's amazing what can be achieved by reducing follow ups from the standard five to two years. My GP referral was never found, that would save time too. Do these hospital managers think we're completely stupid?
Take care, we're off out to afternoon tea this afternoon so I'd better go and get ready.
Much love,
Gill xxx
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Hello Gill,
I am posting to say that I felt quite unwell yesterday and spent a lot of time sleeping. I did not feel like my normal self when I woke up, although I was fine when I went to bed. I felt very groggy, had a headache and was going hot and cold. Raymond was not as badly affected, but still did not feel himself. I am a bit better today but still feel very tired and weak. We both had pain in the injected arm, but that has now gone. I shall just take each day as it comes.
It is difficult to work out what is going on with the NHS. It seems to be that the main problem is not money but a huge shortage of front line staff and too many bureaucrats thinking up new ideas and new layers being formed.
I did watch on GB News an interview with an oncologist professor, who was very down to earth, and said that the NHS was not fit for purpose. I think that for too many years we have been poaching medical people from all over the world instead of training our own. That is not right. Those people are needed in their own country.
I also heard on the radio that the NHS is going to ship people around the UK in order to bring down the six million figure on the waiting list. I also heard that patients in Kent have been sent to France for treatment! I do not think patients should be far from home and away from their families in such circumstances. It is also a bit much when we treat patients from around the world. We are the National Health Service, not the International Health Service.
I recently read, as well, that a twelve minute appointment with a GP costs about £42. Does that sound expensive to you?
I hope you enjoyed your afternoon tea.
I shall end now as I am feeling tired.
Take care.
Love.
Sylvia xxxx
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Hello Sylvia,
Just called in to wish you a speedy recovery. My symptoms were very similar and took several days to shake off. As I'd had no side effects, except for a stiff arm, after my first two injections, I was quite pleased to see that my body was actually responding. My brother-in-law in Bristol has just been in touch and says that he wasn't offered his Covid jabs until two months after the rest of England appeared to have had their's. He's still waiting to be allowed to book his booster. He's 63 years old.
I agree with you about the need to train more hospital staff here. We should also consider going back to the old system of enrolled nurses, which allowed the less academic to undertake a two year training course and do much of the routine care of patients. Many enrolled nurses were offered extra training after a year or two on the wards, they were then awarded registered status and could enjoy a more structured and better paid career. Health care assistants are not a substitute for the old enrolled nurses. Also, far too many recently trained nurses today leave university with their BSc, do one or perhaps two years on the wards and then go off into the better paid hospital management/admin jobs. The number of NHS desk jobs has grown out of all proportion and continuous to grow year on year.
I noted that Dominic Raab explained away the Prime Minister's Peppa Pig episode as Boris just being Tiggerish. The NHS is falling apart, the economy is in crisis, power companies are crashing, refugees are drowning off our coast, Covid is rising all over Europe and Boris Johnson is 'being Tiggerish', making car noises and extolling the virtues of Peppa Pig World to the CBI annual conference, a high profile gathering of men and women representing British Businesses. Eton needs to apologise.
I do hope that you and Raymond will feel better very soon.
Love,
Gill xxx
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Hello Mary and all other posters and browsers from America,
Enjoy Thanksgiving and meeting up with family and friends. Hope Covid hasn't put too much of a dampener on your celebrations.
Have fun!
Gill X
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Hello Gill,
Thank you for your latest post. You always have something of interest to say.
I do agree with what you said about how nurses were trained in the past. It gave them so much more practical training in what nursing is all about. My two nurse friends, one in a London hospital and the other retired, probably started off like that. They stayed on the front line all their careers.
Raymond and I have got ready for bed as we are both tired and have a busy morning tomorrow. I am feeling quite a lot better but still not my normal self.
Iike you I would like to wish all our American posters and viewers and enjoyable Thanksgiving. I do hope Mary will have an enjoyable day and that we shall hear from her soon.
One of my friends here flew off to California on Tuesday to spend Thanksgiving and Christmas with her son and his family. She had not seen them for quite a while, not since Covid.
Have you received the latest email from Chris Woollams? I hope to get to read it in more detail during the weekend.
That is all for today.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Hope you and Raymond have fully recovered from the Covid booster by now. I wonder if the switch from two Astra Zeneca vaccinations to a Pfizer booster made any difference to side effects or immunity? Many epidemiologists favour a different vaccine for top-ups, I think it's far too soon to be certain. So far, the Omicron variant appears to be less deadly than Delta with no deaths or life threatening cases to date. Let's hope it stays that way. It never fails to annoy and amaze me that fewer and fewer people are wearing masks, even after Omicron hit the headlines. I'm hopeful that this mutation may signal that Covid is becoming less deadly, infecting more people more quickly but letting its hosts live. In this way it may become more akin to the common cold or seasonal flu. Spanish flu did just that, the virus that caused a pandemic eventually morphed into another seasonal flu virus after just over two years. Let's hope that COVID-19 follows a similar pattern.
I live in hope that hospital managers will finally have the courage and integrity to come clean about their cancer waiting lists. Patients with breast cancer seem to have been hit the hardest, which isn't surprising given the growing number of women being diagnosed. One in seven is an appalling statistic, considering that it was one in nine only a few short years ago. A few specialist breast cancer centres across the country would be a step in the right direction. People would have to travel which is inconvenient and expensive, but anything is better than this limbo that so many breast cancer patients are now stuck in. Waiting for over 4 months to see an oncologist and be offered a treatment plan is disgraceful and cruel.
I had a look at Chris Woollams' latest newsletter. I was interested in the article on how to grow new brain cells. Once again, the Mediterranean/ rainbow diet is the way forward, also fish, fish oils and intermittent fasting. Eating a diet rich in leafy green vegetables is still a problem for me, but I do include oily fish in my diet. I haven't tried fasting yet, though a huge number of posters on breastcancer.org recommend it. I need to look at more of the research. As ever, time is in short supply.
Look after each other and try to find the time and space to just sit and enjoy being by yourselves without rushing around after everyone else.
Love,
Gill xxx
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Hello Gill,
As far as the coronavirus morphing into something akin to flu only time will tell.
All the news about the NHS seems to get worse and worse. Social care is in a state of collapse with 400,000 people waiting for carers or to be assessed. I cannot see how that will be resolved. There seem to be a lot of people in poor health and I think a lot is to do with unhealthy diets and lifestyle.
Like you, I was interested in the article in the Chris Woollams latest newsletter about growing new brain cells. Again, the Mediterranean/Rainbow diet seems to be at the heart of it, but will people make the effort? Often they prefer a pill. I saw on the latest news that the latest case of Omicron in Brentwood, Essex, appears to have started in the JFC shop. Apparently it is near a school and very popular with the children.
As you know, Raymond and I do stick mainly to that Mediterranean diet which we enjoy. The bulk of our shopping is fruit and vegetables. We do not like kale that much, but it is supposed to be the number one vegetable. We do eat lots of Brussels sprouts and sweetheart cabbage, so that helps, along with, of course, broccoli. We do not fast but we do have a long fasting period between our last meal and breakfast the next morning. I was told when I was doing chemotherapy to make sure to have breakfast in the morning before going off for a session and I used to eat lunch (my own) while I was having my chemotherapy treatment. I never had the slightest hint of feeling sick or nauseous.
Raymond and I are not feeling so bad, but still quite tired.
I do not know where we are going with breast cancer. There seems to be a lot of it among younger women and I do wonder about birth control pills, but also among quite older women, and I wonder about HRT. I have had three very elderly women diagnosed with breast cancer. One of these was a close neighbour, who was diagnosed in her 90s and had surgery. She was then taking anti-hormonal medication, went downhill and died. One of my sisters-in-law was diagnosed about 80 and now another person I know about the same age has been diagnosed. I know that the sister-in-law took HRT for a long time. She is alright but is on anti-hormonal medication. I have no idea what the other person is taking. I usually can guess what is going on by what pills they mention they are taking, so I do not know if things have changed much in the UK as far as being given information. They need to know what kind of breast cancer they have, what the tumour status is, hormonal, non-hormonal etc., the size, the grade, the stage and whether it has gone to the lymph nodes under the arm. Patients must ask questions and they must be ahead of the game. They also need a clear plan of their treatment and why it is being given.
That is all for now. I do wish some of our group would pop up to let us know how they are. I know they have been having terrible weather in Vancouver so I wonder how adagio is. They have also been having bad weather in Australia and I would love to know what Kath thinks of Omicron. I wonder where Mary is?
That is all for now. Take care and keep safe.
Love.
Sylvia xxxx
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Hello Sylvia,
I do hope that you and Raymond are feeling less tired today, it took me quite a while to get over the tiredness. At least we were able to have our boosters before the chaos set in. Johnson stated that people could go to vaccination centres without an appointment. Meanwhile, vaccination centres had been instructed to only vaccinate those WITH an appointment. The volunteers who help to organise the queues at vaccination hubs are now facing some very angry and sometimes abusive members of the public who are blaming them, rather than the Prime Minister for the chaos.
I'm becoming increasingly annoyed by people refusing to wear masks. If they're finding a small strip of material too uncomfortable to wear, they're going to love a respirator! The Leader of the House and Boris Johnson are not the best examples to follow. Breast cancer surgery and treatment is being held up by these selfish idiots who don't seem to understand that the more people who become infected equals an increasing number of hospitalisations, which results in longer delays for cancer patients and other life threatening illnesses. There were far too many in the Cathedral who weren't wearing masks last Sunday. How is their selfishness compatible with Christianity? I despair.
I have long wondered about the impact of the contraceptive pill and HRT on oestrogen fed breast cancer. It would be helpful if the media got to grips with the differences between the various types of breast cancer and emphasised the rise in oestrogen+ disease. It might cause women to stop and think about what it is that they are taking. HRT is the most worrying, but young woman don't take HRT. Obesity and excessive use of alcohol is also a factor and worrying increases in child obesity over recent years may well be having an impact. As you have often explained, breast tumours can change, for example, a triple negative can morph into HER2 positive and so on. It's far from straightforward. As far as I can see from the very limited research available on metaplastic triple negative breast cancer, metaplastic does remain the same. My tumour comprised spindle cells, (cells that are longer than they are wide), and adenosquamous cells. The cause is unknown, but some research points to the possibility of a damaged immature stem cell. A confused cell that doesn't know whether it has been programmed to form skin, muscle of bone. It isn't supposed to be in the breast at all.
December already and Michael's been asked to switch on the lights for the village Christmas tree. I say this most years, but I really don't feel in the mood for Christmas. Might just hang some fairy lights in the trees outside. I'm still a child when it comes to coloured lights and go out at night to see them in nearby villages.
Wishing you and Raymond a peaceful week.
Love,
Gill xxx
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Hi All
I am in the uk and just trying to get to the bottom of a few breast issues. No diagnosis as yet and have posted in the "concerned but not diagnosed" but hope its ok to post here as i am also a newbie to this whole site.x
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Hi Dawn,
We'd be pleased to have you on the thread. Ask us about anything at all that's worrying or confusing you and we'll do our best to help. Hope to hear from you soon.
Gill x
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Hello Gill,
Thank you for your latest post. I have not had time to answer it today, but I shall make sure to answer tomorrow.
Love and best wishes.
Sylvia xxxx
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Hello Dawn608,
I was so pleased to see a post from a Brit, as I did start this thread to help patients in the UK with breast cancer and in particular triple negative status, but all are welcome here.
You are very welcome to ask any questions that you want as you try to get to the bottom of a few breast issues. Waiting to find out what exactly is going on can be a very worrying and frustrating time. Let us know how we can help. We are not doctors but we have all been down this route and we have a lot of knowledge and information, experiences and understanding of what a person goes through.
Wishing you all the very best.
Sylvia xxxx
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Hello Dawn608,
In order to have a better idea of what has been going on with you, I read through all your posts on the thread that you started in October. I can see why you are anxious to get a diagnosis because nearly two months have gone by since you started the thread and also started taking some action. I think you should be having something definite about what is going on in your breast. Everything to do with cancer is going pretty slowly because of the huge amount of time being taken up by the coronavirus.
I do hope you will be told very soon what is wrong and it turns out to be good news. It could be some kind of infection but you do need to get to the bottom of it.
Please keep in touch and let us know what the diagnosis is.
Wishing you all the very best.
Sylvia xxxx
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Hello Gill,
I think that Raymond and I are alright now. We are just fed up with all that is going on and the lack of common sense that seems to abound. As you say at least we all got it done before the chaos set in. It is a bit much that we cannot seem to have a calm and efficient programme of vaccinations by appointment. It is the only way to avoid queues and muddle. Raymond and I had ours done very calmly and very efficiently at a pharmacy. It was the same with the flu vaccination. We have Prime Minister who creates chaos through the way he presents himself. He shouts and blusters, muddles his words, does not finish sentences, and jerks about with his arms and body as if he were gearing up for a boxing match. He tries to make a joke of everything. Yesterday PMQs was more like a gathering of the local yobs! President Macron described him as a clown but I say not a very funny one!
It looks as though we are now heading for Pfizer vaccinations every year. That is what I heard on the news this morning. I am not very keen to have my body subjected to this every year. What will be the long term effects? I am also concerned about the money-making aspect of all this.
I also heard on the news about these possible blood clots from the AstraZeneca vaccine. That vaccine was rolled out too quickly. Apparently they are now going to tweak it to avoid this.
I think that people were made to feel that the coronavirus was behind us and signs etc. about wearing masks removed, and everyone became more lax. We have worn our masks consistently and have not mixed with people. Other people around us seem to think and even say that it is fine to mix with their friends and family.
I feel that women should avoid the contraceptive pill and HRT. This is my personal opinion. It is known that the contraceptive pill is a risk factor in breast cancer and the same goes for HRT.
I do agree that there should be more emphasis on the different types of breast cancer and that patients should ask what type they have. All the emphasis is on the status of the tumour. Reading some of the threads I get the impression that there may be overtreatment for very small tumours. I do wonder whether there is too much chemotherapy treatment being given when it may not be necessary.
What you said about your own metaplastic triple negative breast cancer is very interesting, especially about the possibility of a damaged immature stem cell. How complicated and imperfect our body is.
I saw this morning that a woman, 70+, has just started a new thread. I read her post with interest but was not quite sure how to respond as I could not make up my mind just how much chemotherapy was involved in her first infusion. I would think usually you would have the AC for a certain amount of time, then go to T (Taxol). As for Keytruda (pembrolizumab) I do not know much about because it was not part of standard treatment when I was going through my chemotherapy. If that is now being added to the AC for a first infusion, it would seem a lot for the body to cope with. I would hope that the Taxol was not included in it as well.
You might like to read the post. The woman did seem to have a nasty reaction to it all for a first infusion. Usually side effects build up as the treatment progresses.
That is about all for now. We have problems with the lift in our building, so I am trying to keep myself in a relaxed way as I keep telling myself that I worry too much about everything, at least that is what Raymond thinks!
I feel concerned that we have not heard from Mary, adagio, Kath and Helenlouise. They are probably all suffering from coronavirus fatigue. I did notice when I was reading through the posts that dawn608 had made on another thread that Sondra is still around. I do remember she posted here for a while and that she is an American living in the UK.
Sending love and best wishes.
Sylvia xxxx
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Hello Sylvia,
If you are one of life's worriers, as I am, it's difficult to change. Worriers get things done and do everything to the best of their ability - which is why people expect too much of them at times. I hope concern for others doesn't stop you having a good night's sleep though, that's so important for our wellbeing. The lift at your apartment block has probably been mended by now, if not, I expect you'll be fielding a few complaints over the weekend. People!
I didn't find the thread my the new over seventy year old. If she's having a bad reaction after the first infusion, the next is likely to be as bad or worse. If the lady had an allergic reaction she'll be offered a different form of chemotherapy next time. She needs to contact her specialist oncology nurse, assuming she has one. Mine was very helpful, more helpful than the doctors in fact. She listened and had a wealth of oncology experience. Her practical knowledge in regard to the side effects of chemotherapy helped me to get through it - along with this thread. Anyone who has sepsis after infusions needs to be aware that if they're given universal antibiotics to fight infection, after 3 or more doses, patients who carry c difficile in their digestive tract, (about one in thirty healthy people), may find that non targeted antibiotics kill off the healthy bacteria that protects their gut, leaving c difficile to multiply rapidly. This is life threatening and my oncologist didn't warn me until it was too late. It's something that all patients should be told after their second bout of sepsis.
Two members of the Labour Party have made a written complaint to the Met Police about the Prime Minister's Christmas parties last year. What sort of leader throws a Christmas party and orders the rest of England to stay at home and not visit relatives, even those who are dying alone in hospital? Those who broke the rules were visited by the police and given a very hefty fine. So, what were the police officers standing directly outside number 10 and at the gates of Downing Street doing? Cressida Dick needs to start asking questions and interviewing the culprits, starting with Boris Johnson.
I wonder what's happening in Australia now that Omicron is spreading across the globe? As far as the UK is concerned, I'm taking my advice from scientists, not a shambling clown who gives the impression of being permanently drunk. Leading epidemiologists are deeply concerned by how rapidly Omicron is spreading and infecting the double jabbed. The advice from them is not to attend Christmas parties. Seven hours ago the WHO stated that there have been no reported deaths from Omicron. Let's hope it stays that way.
Wishing you and Raymond a peaceful and relaxing weekend, despite the lift.
With much love,
Gill xxx
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Hello Gill,
I do tend to be a worrier, but do not show it most of the time. I have very high standards and like to do everything properly and perfectly. I am pleased to report that our lift is now in good working order.
There are two women that I have been mentioning. One is Dawn608 who did post on here and I did read her posts on the thread she started in the Forum Not diagnosed but Worried, thread Anybody had similar?
I do not know if she came back to see what anyone had said on our thread, but she certainly has not posted here again.
The other woman was a 70+ woman who was having very bad side effects after her first chemotherapy session. You will find her posts entitled FTNBC_1980 in Triple-Negative Breast Cancer forum, topic AC dose dense for elderly that she created. I read her details there and could not quite make out whether she was just beginning treatment with chemo or had had her surgery because she had the details in her profile.
Let us hope she reads your post.
I do hope our thread will be more back to normal when we find a way of coping long-term with this coronavirus. It looks as though we may be heading for vaccines on a yearly basis, as we are doing with the flu vaccination. After all, it is coronaviruses that is causing flu. I did wonder about this when I saw on the flu leaflet that it was covering four strains. Today I heard on some news programme on the television that it was four coronaviruses that was causing the flu. This makes me wonder whether the latest Covid -19 has been hyped out of all proportion. It is very difficult to make sense of any figures that we are given. The latest figures of about 50,000 positive cases would seem to apply to the delta variant and the same with the death figure of 147 in a day. It all gets muddled because of the four disunited parts of this strange country of ours! As far as Omicron is concerned, the figure seems to be 127 cases in England.
It was announced today that the scientists in South Africa are saying that the cases of Omicron there are doubling twice as quickly as Delta. It looks as though the developed countries are paying the price for hogging all the vaccines.
We still cannot be really sure of how effective the vaccinations we have had of making sure we do not get very ill. I think a lot of it depends on our state of health when contract the virus.
Like you I am very concerned at what is going on with cancer patients and their treatment. I heard on the news today that 700,000 potential cases have been missed during the pandemic. That is disgraceful. Things were bad enough before the pandemic. It is not going to help that GPs are now being told that they can concentrate on vaccinating people and not have to give the over 75s appointments for health checks. Since when did GPs study and train to turn themselves into vaccination volunteers! Are the 75+s now considered to be dispensable?
I am getting pretty fed up with hearing the word Christmas, especially when it is followed by party! We shall never know the truth about what went on in Downing Street last Christmas. Our esteemed Prime Minister says that he was not there. Apparently Keir Starmer is said to be having his own party on December 15th! We have all this nonsense going on when our priority should be about solving the problem of illegal migration.
I have no idea what is happening in Australia and we do not have Kath and HelenLouise at the moment to keep us informed. I do hope they are alright.
That is about all for this evening.
Take care.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I heard from a friend living in Hertfordshire yesterday, she tells me that hospital breast clinics in her area are all continuing with the annual breast surgeon consultation for the full five years post treatment. Another friend in London has also told me that there is no change for her either. Is it just the Norfolk and Norwich University Hospital that's short-changing its breast cancer patients then? It would be interesting to hear from others in the UK who are now reaching the two year mark since completing chemotherapy. After two years patients here are being cut adrift, it will undoubtedly cost lives.
The Government is now attempting to introduce an "Interpretation Bill" which will involve a Government review of decisions made by the judiciary. The Government will have the power to throw out or reverse any decisions it doesn't like. There's a petition online at Change.org. This is a very dangerous step and would have serious repercussions for all of us. As always, my prime concern is the future of our free at the point of delivery NHS.
Christmas is definitely oversold and it's been getting worse year on year. The only part that we find tolerable is the week before and Christmas day itself. The rest is about money, overeating and drinking too much. Midnight Mass or Church on Christmas morning is the best of it for me, though I do enjoy listening to a traditional Christmas story on the radio. At the moment I'm listening to 'A Christmas Carol' read by Sean Baker. It's on Radio 4 Sounds and is one of the best productions I've heard.
Dawn608 seems to have disappeared since she last posted here. I wish she'd call in to let us know what's happening. I don't know where she lives in the UK.
Johnson was last seen impersonating a police officer in Merseyside. He was wearing a black beanie hat with police logo, police jacket and stab vest - the full works. His dressing up box must be crammed to the top. Fisherman outfit, scientist, builder, policeman, health worker, Prime Minister, he's done the lot.
Before I get overly cynical I'll sign off.
Keep warm.
Love,
Gill xxx
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