Calling all triple negative breast cancer patients in the UK
Comments
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Hello Sylvia,
You're GP surgery seems to be at least running. My old practice is dangerously short of qualified staff, perhaps doctors prefer Devon to Norfolk. Good point about Astra Zeneca, where on earth has it gone? It was widely used in Norwich for the first and I think, the second vaccination. No one even mentions Astra Zeneca now, I haven't heard of any problems with it though.
I'm increasingly concerned about the use of healthcare assistants for vaccinations, blood test, diabetes clinics, blood pressure checks and so on. Michaels blood pressure was far too high, especially as he's taking ace inhibitors. The healthcare assistant told him he was fine! They can't change a patient's meds (thank heavens), and when there's a problem don't appear to have easy or quick access to a doctor. When the Government refers to nurses, I think HCAs are being classed as nurses. When I had my blood test, the HCA had quite a superior attitude and was talking as though she had computer access to my medical notes. She hadn't and whilst I dislike being sharp with people, I felt it was necessary this time. It's a concern though, as many people are unaware of the difference between qualified staff and assistant staff. They all seem to wear scrubs and not everyone reads their identification badges. Why is everything so confusing, incompetence or deliberate ?
I was interested in the leaflets you read at the surgery. I knew that obesity was implicated in oestrogen+ breast cancer. There were quite a lot of overweight women in the chemotherapy unit. I wonder if weight is also connected with other breast cancers? Alcohol is definitely a factor in many different cancers. I think people assume that excessive or even moderate alcohol only causes stomach and liver cancer. In the hospice there were plenty of other particularly vicious cancers connected to alcohol intake. Oesophageal, head and neck cancers were probably the worst. Caused equally by alcohol and tobacco. Smoking cannabis was also an issue. Very sad to see a younger person dying because they had wrongly believed that cannabis was safer than tobacco. I've never smoked and only drank excessively during my first two years as a student. Michael smoked but gave it up after we were married in 1975. Like me, he only has a glass if wine very occasionally to be sociable. Perhaps the economic crisis will force people to quit smoking and drinking. I very much doubt that it will do much for the obesity crisis.
I haven't seen able to send a PM to helenlouise. Either me or the system is confused.
Wishing you a peaceful weekend.
Love,
Gill xxx
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Hello Gill,
I have just done the procedure quite easily to send a PM to someone. I put in HelenLouise and noticed that she has not posted or been seen since May 7th 2022. I decided not to send a PM in case it seems too intrusive. Something may have happened to her or she may have just decided not to post any more. This happened a lot. It has happened with Marias and Hanieh/Hantagh. We shall never know what has happened to them. Many people on this thread and no doubt others have just left when their treatment ended. We shall have to wait and see if we hear from HelenLouise and indeed Kath in the future. The truth is that our thread and indeed many others are not that active any more. There is only so much that you can say about breast cancer, the treatments etc. There is much more information around now than when I started this particular thread back in 2010.
it was strange that we were talking about AstraZeneca in our last post. Last night on GB News I watched the 6pm to 8pm programme headed by Neil Oliver (famous for Coast). The topic of AstraZeneca and what had happened to it came up. He was interviewing a woman from HART and she was saying that all investigations into the AstraZeneca vaccines had been held back by the MHRA, which I think is the Medical Health Review Authority. This was unlike the investigations into the Pfizer vaccines which are ongoing. Apparently all freedom of information requests about AstraZeneca were coming back 'currently not available'. There was some mention about excess deaths in the 12 to 19 age group after AstraZeneca.
HART is searching for a peer review on AstraZeneca. There was talk about AstraZeneca apparently having huge health risks and questions about these excess deaths and what caused them if not the vaccine.
It does make you wonder about all the haste back in 2020. Raymond and I have now had four vaccines (others have had five). The first two were AstraZeneca and we had no choice. The third was the first booster and the recent fourth was the bivalent and they were Pfizer and again we had no choice.
Apparently GB News asked for someone from AstraZeneca to come on for an interview but they received no reply.
I was quite unwell from the last vaccine and the next day felt completely exhausted, shivery and cold and spent a long time sleeping. I am alright now but my left arm feels sore to the touch. Raymond felt a bit washed out but not to the same extent as me. He also has a very sore arm.
It should now be common sense that alcohol, cigarettes, drugs and being overweight is not conducive to good health. There is far too much processed and over processed foods being eaten. I am always astonished how the food industry cannot stop ruining simple healthy food, like an orange or a carrot. It was much better when we had small shops such as greengrocers, grocers, bakers and so on. It was also much better when we had smaller surgeries and hospitals. Above all we are suffering from overpopulation, especially in the UK but also in the world in general.
That is about all for now. I had better try to get on with the day.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I used to be able to send private messages and receive them but this is no longer the case. I think they've become switched off and I don't seem to be able to switch them on again. This site is now clunky and inconvenient. I do think you're right about not messaging helenlouise. She hasn't posted anywhere on the site for six months now and her breast cancer had spread to her skin last time we heard from her. I think she would have kept us up to date with her new treatment if all was well. We can always hope.
I go for my flu vaccination at a supermarket in Norwich on Tuesday morning. Needless to say, the GP surgery hasn't arranged any jabs - again! Hoping that any side effects will be very short-lived as I'm meeting an old friend for coffee the following day and I don't want to cancel. I thought that you and Raymond might be unwell after your covid jab. I hope you're feeling much better very soon.
Thank you for passing on the information, or rather lack of information, about Astra- Zeneca. It should concern us all that investigations into AZ have been held back. More disturbing is that no peer review has been found and requests for an interview are being ignored. I still watch Dr John Campbell on YouTube from time to time and he's very concerned about all the extra deaths being recorded. I seem to remember that the deaths were in males under forty years. The longer the public is kept in the dark, the more suspicious I become. My daughter has had her six year old son vaccinated against covid. It's all very worrying. Nothing is transparent any more. I didn't think that public organisations were allowed to hide behind phrases like information 'not currently available' though many Government departments have begun to do precisely that. Just what the Freedom of Information Act was designed to prevent.
I'm afraid that the message about drinking isn't getting through. I know that older people in my friendship group have become rather too fond of their wine. Wine , on average, is only about 12% - 15% , but not safe when you drink it every day. As for processed food, it's of concern that somehow vegans have managed to push through the message that veganism is a healthy alternative to animal based food. It's highly processed and in my own view, just as bad as any other processed food. We shall see the results a few years time.
That's about all for now.
Take care,
Gill xxx
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Hi Gill and Sylvia,
It's scary hearing about all of these difficulties. We are very similar here in the US, except we can get almost any vaccine we want to have. Many of our pharmacies offer shots. All you need to do is schedule an appointment online. I was advised to wait until December because I had COVID in July.
I'm very worried about the drinking and smoking though marijuana is the biggest offender here right now with the recent legalizations. When my husband and I go to the park to walk our dog, you can smell it everywhere. It's right out in the open and stinks!
I've never been a smoker or drinker, though I have had occasional wine or beer. However, my family had big smokers when I was growing up, so there's the second-hand smoke issue there. Thankfully, I didn't contribute to that with smoking and my lungs are clear. My husband was a smoker and quit before we got married. I remind him often how I've added years to his life!!
Our mid-term elections are tomorrow. I'm very concerned about them. We could lose so much, more than we have lost already. Candidates are talking about banning books and recalling elections (what I call negating my vote). It's a crazy world out there.
I completed my 1st week back to teaching last week. It was tiring but very satisfying. The kids are interesting, but they haven't really learned how to be students because of the pandemic and all of the remote and quarantine learning. They are getting used to my teaching style, which is firm, but caring. We'll have a great year and I'm looking forward to it. This week, we only have 2 days of school because of election day and a state-wide teacher convention. I am not attending the convention this year.
Stay healthy and safe!
Love, Sue
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Hi Sue,
I was wondering how your week had been. The pandemic has had a detrimental impact on learning here too. My grandson's a very lively child and needs continuity and the kind if discipline specific to the classroom, where other children have needs and a right to be heard and learning is a shared experience. Inevitably, children from chaotic households, (polite term), will have fallen way behind those from homes where education is valued and encouraged. You're wise to stay away from the convention while covid and flu are ramping up again.
When I was a child, most male adults smoked. My home was filled with smoke during the evenings and weekends. No-one thought about the dangers of secondary smoking and many children, myself included, developed an early smokers cough during the colder months when everyone was shut indoors. I don't have any friends who smoke, some smoked when they were much younger, but gave it up when the health warnings arrived on TV. School staffrooms were filled with cigarette and sometimes pipe smoke when I first entered teaching. What an example to the students!
Politics in the States seems to be as worrying as it is here. The rise of the right wing has been swift and terrifying. Intolerance, dishonesty, corruption and racism is on the rise everywhere. In the UK the poorest in society are always hit the hardest by cuts to essential services. Our Government hasn't quite reached the stage of book burning yet, but it's probably not too far off. Freedoms are being curtailed bit by bit and democracy is failing in the West. Worrying times ahead.
Keep safe and well and enjoy just living your life.
Love,
Gill xxx
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Hello Sue,
Thank you for your interesting post. It is good to know about what is going on in another country from a friend who actually lives there, as we cannot believe the media. I was very interested to know that vaccines are so readily available in your country. Are you able to choose the brand of vaccine that you want, that is Pfizer, Moderna, AstraZeneca or others? Here you have to accept the brand that they happen to have at the moment. I think all of them probably have failings as there have been a number of deaths attributable to them and the government has had to pay out compensation to families.
I can understand your worry about drinking, smoking and drugs such as marijuana. It is the same here and there are lots of problems with opioid drugs. So far marijuana has not been legalised. There seems to be a big problem with vaping here, especially among young people. There is also a problem now with young people and some kind of nicotine patches on the mouth. I think there is too much promotion of alcohol and not enough emphasis on the fact that it is an addictive drug. The government, of course, makes a lot of money on alcohol, but the NHS wastes a lot of money dealing with the consequences of it.
I have been following some of the coverage of your mid-term elections and have been wondering what the results will be.
I think it is really bad about banning books and recalling elections. Where are we going in the supposed democratic western world?
I was glad to read that you enjoyed your week back at teaching. I do hope the children will be able to settle back to proper schooling. They have been so held back by Covid. I am sure they will make good progress with a good dedicated teacher like you.
There has been news on the radio today about triple negative breast cancer and a drug that is being used in trials and that will be used earlier in treatment. I need to get some more details.
Take care of yourself and do not overdo things.
Love and best wishes.
Sylvia xxxx
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Hi Gill and Sylvia,
When the vaccine was new, we didn't have much choice. But over time, we have some choice. There are so any pharmacies and other locations that have shots available, it's easy to choose which one you want. You just go online and sign up for a location that has the shot you want.
My husband and I organized his mother's 99th birthday party yesterday. My husband has 4 brothers and they all were able to get there. It was a lovely celebration! My sister-in-law, from Vermont, bent my ear for a long time. She's been against many vaccines, especially those for children. She's also led an anti-mask campaign. She is a bit of a fanatic, but she makes some good points. Unfortunately, many of the vaccines are required for the kids to be in school. I'm wondering if Covid vaccines will be required too.
The elections have been interesting. Though we don't have results in several of the races because of polling issues, the projected results are as expected. I'm thankful that none of the "book burning" candidates won in both my home school district and the one in which I work. I was very worried about their "back to basics" opinions without understanding the research or the effects of the research. I have read a great deal of the "science of the brain" research and it seems very interesting. However, people don't understand the time it takes to develop new language arts programs to match that research and also the cost of buying them for the schools. They just demand that we have them and use them--immediately! It just makes me shake my head.
I have to look up the new drug for triple neg breast cancer. I'd be interested in reading about it. I am so thankful for the treatment I was able to have. I had a 3 month check with the surgeon yesterday. She was very happy with my healing process. I will need to return in the spring.
One of the things that struck me during treatment was that everything was so focused on my right breast, and no one bothered to check the left--because the lump I felt was on the right. I asked my GP that question. She said that the mammogram looked clear on the left and that we should take care of the right. Now, I'm concerned about the left side. Though I think we all have to live with that for a long, long time. It is worrisome.
It's still very warm here. I'm thankful for that!
Stay healthy and safe!
Love, Sue
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Hi Sue,
We've never been allowed any kind of choice regarding vaccines. We are told what we're going to be given on the day we arrive at the vaccination centre. Only one type of vaccine is available at any one centre. I had three Pfizer and one Moderna. So many people were dying at the time of the first vaccination that I was just grateful to have what I was given. Not quite as confident about Pfizer now, why aren't we allowed access to all information, reports on deaths, serious illness etc connected with this particular vaccine? If all is well, why the secrecy? Having said that, I probably feared Covid more than the vaccine. Most deaths have occurred in males under 40 and my son, aged 38 decided to stop after his first two jabs.
Congratulations to your mother-in-law, that's quite an age. She's lived through some very interesting (and frightening) times. I don't have the slightest idea why your sister-in-law would want to campaign against mask wearing. I still wear a mask in crowded places. At the height of the pandemic there were plenty of anti-maskers here too, I kept well away from them and learnt how to look disapproving while half my face was covered.
Very glad that the book burners in your teaching area lost. 'Back to basics' is often a ploy used by those who don't/can't understand progress and new ideas. They fear being left behind. I always follow the American elections and was relieved that the Republicans didn't do as well as they expected.
I had the same anxiety as you regarding the medics completely ignoring my 'good' breast. When I presented with a left sided lump, I was given a left sided mammogram, followed by a left sided ultrasound. A year after treatment I was given a mammogram on the right side and I asked for an ultrasound on the mastectomy side. This was refused - which is normal practice in England. I won't know if anything is happening on the cancer side unless I discover a lump or similar. I find that the worry of recurrence hasn't gone away, but mostly stays right at the back of my mind nowadays.
Enjoy your weekend.
Love,
Gill xxx
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Hello Sue,
I was looking through the pages of the active topics over the past few days. There are usually about ten pages, but they are quite short now. I noticed that at the bottom of the pages, and also at the top, there are various pictures that you can click on and they deal with different aspects of breast cancer and under our thread different aspects of triple negative breast cancer, such as what it is, who is the most affected, the treatment and so on. It is based on American data. I get the impression that the site is doing this.
I noticed that the treatment for triple negative breast cancer now adds immunotherapy to standard treatment. It made me realise that what I heard on the radio here about the new drug that the NHS was adding to triple negative breast cancer treatment was a drug that is already used in the US for it but is now being added to the NHS. It is an immunotherapy drug called pembrolizumab and its brand name is Keytruda. I have seen this in various posts on the thread. I was aware of it because a good friend of mine here was on it for the treatment of her melanoma. It did not work for her and unfortunately she died. Apparently it is also used for lung cancer, head and next cancer, Hodgkin lymphoba, stomach cancer, cervical cancer and certain types of breast cancer. It is given by slow injection into a vein. I think it has mainly used in the past for metastatic breast cancer, but is now being used for primary breast cancer.
I found it quite interesting going through the various pictures on each page.
With the pembrolizumab drug, an immunotherapy drug, it stimulates the body's immune system to fight cancer cells. Apparently this drug targets and blocks a protein called PD-1. I know nothing about this protein and wonder how it is known that you have it. I also do not know what the side effects are and how successful this drug is.
I know from following your treatment that you have gone through the treatment with pembrolizumab (Keytruda) added to your other drugs. Remember, in the UK we are often behind.
As for mammograms, I would think that, if you are having regular mammograms to detect any signs of cancer, before any diagnosis, that both breasts would be looked at. Once a cancerous lump is detected in one, obviously the emphasis is going to be on that one. I know that after diagnosis I had regular physical examinations at the hospital, alternating between the oncologist and the breast cancer surgeon. I had this for ten years after finishing treatment. After five years of alternating, I was discharged from the breast cancer surgeon and then for the next five years I had physical check ups with the oncologist and then was discharged. I did have a couple of mammograms but the routine was you did not have ultrasound unless the consultant thought there might be a problem.
Surely you will be having post treatment check ups and mammograms for the left breast?
Everything is much the same here, that is an awful mess!
Keep well, keep safe, and keep looking forward.
Love and best wishes.
Sylvia xxxx
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Hello Sue, again,
I have just had a quick glance at the picture again and there is one in particular that is of special interest to those of us with triple negative breast cancer. If you click on the picture where it says "What is triple negative breat cancer?" and you click on the little square which says "Read" you can go through a whole lot of different information and one part lists the different immunotherapy drugs.
Take care.
Love.
Sylvia xxxx
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Hello everyone,
I thought you might be interested in reading online all about the ESMO Breast Cancer Conference of May 2022. It is available online if you just Google ESMO.
Hello Gill, I do hope all is well with you and that you are not ill and are just taking a break.
We are certainly living through very difficult times and seem to be going backwards. What did you think of the pronouncements from the rich and pampered in the so called 'budget'? It makes me think of the famous saying 'who will guard the guards?' Such stealth is unbelievable.
Keep safe, keep in touch.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your post of November 6th. Many apologies for this, I did not realise I had not replied.
I am not sure what sems to be happening with you and the Private Messages. I think the last time I sent one was probably to Mary and I do not think I had any problem. As you say, this forum is not what it used to be since the 'experts' interfered and somehow managed to de-personalise it, made it more difficult to use and made it bland. Later today I shall try sending a PM to you and see if it works.
Weree you alright after your flu jab? As for Raymond and me, we were exhausted after our Covid vaccination for a few days but soon recovered. I still wonder what damage it is doing to our body because there is so much talk about all the brands of these vaccines causing heart siease and myocarditis. It is also clear that the vaccine does not stop you spreading Covid but, hopefully, it prevents you getting it so seriously that you have to be hospitalised. I have been following GB News about all this (Mark Stein 8pm Monday to Thursday). The BBC is not very forthcoming about this information.
Like you I feel very strongly that the message about drinking alcohol and over-processed foods is not getting through. On the contrary, alcohol is promoted as being essential to having a good time. The government makes plenty of money out of alcohol but it is definitely because of how much it is costing the NHS to take care of people with alcohol related chronic illnesses. There is probably too mush smoking and I do not think that vaping is a good idea.
I do wonder what has happened to adagio. She was posting and obviously was going to tell us about how she had been getting on, but something has gone wrong. How on earth did her username get changed and nothing done about it? As for Mary, it is not like her to be hit and miss like this, so I do wonder if she is having some health problems. As we have already said, we are both concerned about HelenLouise as she has gone through so much. What do you think has happened to Kath?
What do you think of all the pictures that now appear top and bottom of pages and you can click on them to get information? I think they divert from the community aspect of the forum.
That is about all for now. Make sure you and Michael keep safe and keep well.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I just wanted to let you know that I did send a PM to you from the forum and a message came up to say that it had been sent successfully so I hope that you receive it.
By the way, on All Topics, I noticed the first lines were all about a makeover of the site that dates back to September 9th. It said it would be up and running in 2023. Look out for more trouble!
All the best.
Sylvia xxxx
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Hello Sylvia,
No apology necessary, I was just concerned that you hadn't been on the thread since you replied to Sue six days ago - not your usual pattern.
I didn't have any reaction at all to the flu vaccine, I hope that doesn't mean it hasn't work - most people seem to have a stiff arm at the very least. Apart from during cancer treatment, I don't think I've ever had so many vaccinations. We probably agree to have them because the majority if people do and that includes doctors. Doctors are never wrong!!! Neither covid or flu are easy to get over once we reach the near seventies or older, so the choices for us are a bit limited. A serious dose of covid might mean a hospital stay and I intend to avoid our understaffed, underfunded hospitals whenever possible.
The Autumn budget statement was absolutely as expected. The Government crashed the economy and we, the peasants, must work harder, expect less, freeze and starve to dig the country out of this big black hole to enable the uber rich to maintain their lavish lifestyles. Someone should tell this shower that '1984' was a piece of fiction, not a Tory instruction manual. Hunt admits that the NHS is crumbling. He has no shame. He was the Secretary of State for Health who cut NHS funding, encouraged the rot and brought in the private for profit sharks. I'm frightened to be ill, and so are most other people.
I did notice that more changes to the site have been taking place, I don't think I can face another makeover, however small. I'd just be grateful if I could stay permanently logged in until I actually wanted to log out. The community spirit has been badly compromised by the changes. I wonder if adagio will have another go at posting?
That's about all for now. Wishing you and Raymond a quiet weekend.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post. I shall answer it tomorrow when I hope to have more time.
I was glad to know that our PMs had worked.
I have sent off PMs to Mary, adagio and Kath. All these went off successfully.
I tried to send a PM to HelenLouise but this failed. I looked back at HelenLouise's last post on May 7th and noticed that at the beginning of her post she had said that she was trying to sort out her profile. I tried several times to send the PM but a notice came back saying back it had failed due to a technical difficulty. I cannot understand this. I tried sending it in the same way as the others but that did not work. I then followed the given instructions on how to make a member a friend by going to her profile. This also came back that it had failed due to a technical problem. We members should not have to go though these problems!
I shall talk to you tomorrow. Somehow we need to make our thread worthwhile.
Take care.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
I think we all react differently to these vaccinations. All we can do is hope for the best. I do think that we are probably having too many now and that it is becoming too much of a way for government to control us all. I shall be very reluctant to have any more. In 2005 I had a flu vaccination and a pneumonia vaccination on the advice of my oncologist as I started my breast cancer treatment. After that I had no vaccinations until 2014 when I had a flu injection. After that injection, which I had in my left arm, I had swelling in my right arm where I had had lymphoedema mildly after my cancer treatment. I was concerned and got myself referred to the lymphoedema clinic for a little while. My arm quite quickly returned to normal. I was told that the flu injection in 2014 after a long period without any flu injections had probably resulted in a flood of antibodies. I went about five years with no flu injections, had one about 2019 and was fine. I was fine with the latest one this year. This year I also had the shingles injection and the four Covid injections. The last Covid injection made me feel exhausted and Raymond felt much the same.
As for the autumn budget, I feel it was all very dishonest and that the government must think we are all stupid and that we cannot see through their dishonesty. I did laugh about your comment about '1984' and the Tory instruction manual. I do not like the country being run by wealthy people who have no idea of everyday life.
I do wish those in control would leave the forum alone. There was nothing wrong with it so why mess around with it?
I did receive a PM response from Kath. She is alright but has been overwhelmed with work and other duties. She said she will be posting.
As I type this to you I have not received a response from Mary or adagio but I hope they will reply. I found adagio under adagio in the membership list.
I cannot understand why it does not work for HelenLouise. It does not make sense. She is still a member so it should work but again in her last post she said she was having trouble with her profile.
That is about all for now. It is very cold but dry here in Exmouth.
Wishing you and Michael a quiet weekend. It seems that we are all suffering from lack of time to relax. Frustration from some of the technology does not help, nor do all the problems created by the new way of running this country. Everything is too time consuming, especially making phone calls that take up too much time while you listen to all kinds of messages about doing things online or that there is heavy demand on calls at the moment! I do not like being in a never ending queue.
Stay safe.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I am posting just to let you know that I have also sent PMs to Marias and Hanieh (Honeytagh). A notice came up that they had been sent successfully. However, that does not mean they will be read. I do hope all is well with Mary, because it is not like her not to respond.
Hope you are having a good weekend.
Love.
Sylvia xxxx
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Hello Gill, Sue, Mary, Kath and adagio,
This afternoon I have managed to sit and read through the most recent edition of Chris Woollams' newsletter, dated November 14th 2022. You will remember that Chris is the founder of CancerActive. There are a lot of subjects in this latest one and I have read through them but still need to go through some in more detail. Remember, he also does shows and other things. You can find him online and can sign up to his newsletter there.
These are the main topics covered in this issue.
1. Why you should give up sugar for 10 days.
2. Why you are not doomed – 8 days of top cancer tips.
3. Cytomegalovirus – never heard of it? (I found this very interesting).
4 Holistic Dentistry – how your teeth can make you ill.
5. Less cardiovascular disease, and a longer life?
6. Ways to fight arthritis – an update.
7. Top Ten Chinese Herbs for Cancer.
8. How to make orthodox cancer treatments really work.
9. Self Help for cancer – a Patient Perspective?
10. Thinking differently about your cancer.
If you obtain this newsletter online you will see that each subject has a link to more detailed information.
I doi hope you have all had a good weekend and that the November weather and the doom and gloom that is our daily dose news is not getting you down.
Thinking of you all.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia and Gill,
Thank you for all of the information! It's hard to sort through everything, especially now that I'm back to work and so busy. Most of the business is not really related to the children, unfortunately. The paperwork that we have to do these days is overwhelming and ridiculous! I could really do without that side of it. Just let me do my job!!
I have to check out the Chris Woollams information. I'm especially interested in the article about sugar. It's strange, but sugar is one of the main things that doesn't taste right (or very appetizing) since chemo. I've had a cookie here and there, but the taste of anything with sugar is awful to me. I'm almost happy to give it up entirely. I also have to be careful about several other things. Acidic foods like tomatoes and tomato sauce still don't taste good to me.
I've asked my oncologist about it, but he just says that it will all come back eventually. I'm not so sure I believe that.
So I eat lots of healthy food. Salad and raw veggies are really my mainstay. Most fruit is okay, though when it is really fresh and not overripe.
I had a flu shot with little reaction or soreness. I'm debating another Covid booster (the 2nd booster). My GP told me to get in in December. I haven't decided. Many of the children in my class have been ill. Their parents keep them home, thankfully. There is an upper respiratory infection that has been hitting kids really hard here. Many of them are sick with fever and coughing for weeks. I've had a child in and out of school since I started back. I've only seen him about 3 or 4 days since I came back November 1st.
I will check in soon. This week is our Thanksgiving. I had to push with my husband, but I am not having guests this year. I want to be careful over the holidays.
Stay well and healthy!
Love, Sue
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Hello Sylvia,
Autumn has definitely arrived in Norfolk, plenty of rain and dark, gloomy days. We do need the rain though, my stream is very low, as is the marsh pond. I don't feel much like going out at this time of year, but have to go to the archive tomorrow and on Thursday. We're staying well clear of the city centre as Black Friday is upon us. If only Black Friday was just on a Friday instead of every day for at least two weeks!
You're right, reactions to vaccinations do vary. Mary and I both react badly to the tetanus vaccine. My flu injection site bled for a while so I wonder if the pharmacist missed the muscle? Anyway, no painful arm or any reaction at all.
I've been doing some in depth reading about breast implants recently and I have to wonder why anyone takes the risk. As far as cancer patients go, the NHS regularly check patients' implants and remove them if there's a problem. However, with the near collapse of the NHS and 7 million people on the waiting list, how long will breast surgeons continue to do so? When an implant leaks, it requires timely removal. Also, as most of us know, Infections after implant surgery aren't particularly rare, but infection can also arise years or even decades after surgery. I do think that women should reflect long and hard before going down the implant route. Of course, I was 63 when I developed breast cancer, which made the decision to go flat easier - even so, I sometimes considered an implant simply because it would make buying tops a lot easier. A younger woman would find the decision much more difficult. How long will NHS breast surgeons continue to offer DIEP flap reconstruction where surgery lasts for between 6 and 8 hours? It's a difficult moral dilemma for breast cancer departments. Women newly diagnosed with breast cancer need surgery urgently. Are women who want flap reconstruction now being advised to have their mastectomy as soon as it's offered and go on a very long waiting list for reconstruction surgery? I wonder if anyone browsing here knows what's happening?
I haven't read Cancer Active yet as I'm snowed under. So much to do and nowhere near enough time.
Stay safe and well.
Love,
Gill xxx
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Hi Sue,
Teaching is very much about filling in endless forms, student assessments and so on, in the UK too. My daughter's a doctor and complains bitterly about the vast and growing amount of paperwork she has to get through. It really eats into the time she has left for seeing patients.
I'm not surprised that your taste is still off. It will be back to normal one day! I couldn't stand anything sweet during treatment and for many months afterwards - no bad thing in my case. Cakes, puddings, chocolate and biscuits were definitely off the menu.
There's an upper respiratory virus infecting people here too. I don't know how much is in the classroom yet. It hasn't reached my grandchildren so far, probably waiting for the Christmas holiday - we are travelling up to see them just before Christmas!
You're being very sensible avoiding guests at Thanksgiving. You're still recovering from chemotherapy and other treatments, it amazes me how quickly our friends and relatives forget just how gruelling cancer treatment was for us. The many side effects don't just disappear once patients look normal and go back to work. Glad you and your husband are taking a firm stance. It's absolutely okay to put yourself first.
I understand your dilemma about the covid booster. You work with children though and this makes your chances of becoming infected much higher than the average.
Stay safe and well and enjoy Thanksgiving with your husband.
Love,
Gill xxx
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Hello Sue,
It was nice to hear from you. It looks as though we are all very busy and chasing time. It is sad that in today's workplace people are being overwhelmed with paperwork. Bureaucrats have become a nuisance. As a former teacher myself, I can fully understand that you just want to get on with your job, which is first and foremost to teach your children.
Take your time with the Chris Woollams information. The best thing is to sign up to his newsletter and then you can read whatever you like at your leisure. I have been with him since 2005 when I was diagnosed. On my first visit to the hospital after diagnosis I discovered his magazine, icon, from CancerActive, and found it so interesting and helpful. It guided me a lot through my treatment. I think most of his work is now online.
The chemotherapy drugs during treatment seem to affect our taste. I found that my food seemed to have a metallic taste, but it soon disappeared after chemotherapy finished. I do not have a taste for sugar anyway so have no longing for sweet things. I do eat a lot of tomatoes and they are a healthy food. I eat both raw and cooked tomatoes. Cooked tomatoes are especially important because they provide lycopene which I think is supposed to be an anti-cancer nutrient. Give yourself time for your taste buds to normalise.
Like you, I also eat lots of fruit and raw vegetables, but also plenty of lightly cooked vegetables, especially carrots, broccoli and the cabbage family.
I was sorry to read that the children in your class have been ill. I do hope that we can all get back to normal after Covid, but unfortunately it is very much still with us and people are not taking care.
I do hope you have a nice Thanksgiving.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your post and the information about implants. I do think women should have a good think before getting into surgery for implants. This is long and complicated surgery. It was something I would never have wanted.
I noticed you said that you were 63 when you were diagnosed. I was just a couple of months from my 63rd birthday when I was diagnosed. We keep being told that triple negative breast cancer affects mainly younger women, which makes me wonder what the percentage of women 60 and over is for triple negative compared to those 50 and under. Is it that younger women are more unhealthy these days? It seems that the birth control pill may have negative implications, not to mention alcohol. The message seems to be that you cannot have fun without alcohol. It is especially being promoted with all the Christmas advertisements.
We have had plenty of rain here but it is dry at the moment. We have had some really nasty winds.
That is about all for now. We all seem to need more hours in a day. I have had no reply from my PMs to Hanieh, Marias, adagio or Mary and I have had no success with even sending a PM to HelenLouise.
Take care.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Perhaps people are having problems with PMs, I know I did.
I was never given any advice about avoiding alcohol after breast cancer and I know many women who have continued to drink large amounts of wine. It's puzzling that wine is being drunk by older people almost as if it was a soft drink. Have friends who offer a glass of wine before they offer tea or coffee. Part of the problem was doctors on tv announcing that a daily glass of red wine was actually good for people. It's not. I do have several GP friends who don't drink on weekdays, but will get through a couple of bottles over the weekend. Smoking is always emphasised by health professionals but alcohol is at least as bad.
All the women I've met with triple negative breast cancer have been over fifty-five. My friend who had treatment at University Hospital London said that her breast surgeon expressed surprise that she was in her mid sixties, saying that triple negative cancer was a young woman's disease! So many doctors repeat the same old myths particularly about breast, prostate and colon cancer. I discovered this while working in the local hospice. It costs lives. Whatever happened to the lifelong learning initiative for medics? I would advice people who think they might have cancer, but are dismissed by their GP or hospital doctor, to seek a second opinion in one of the larger hospitals with a good reputation for treating cancer. The Christie Hospital in Manchester, the Royal Marsden or the London Cancer Centre, for example. Not everyone can afford to pay, but I also found that pestering the department worked well.
The crown came off a molar last night. I've looked at the tooth and there a deep crack right the way down the front and some decay. I'm seeing my dentist tomorrow afternoon, but expecting some bad news. Do we all need a third set of teeth to start growing when we're about fifty? Nature needs to catch up with humans living longer.
Stay warm.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post. As for alcohol, it is pushed forward all the time as essential for having a 'good' time! The truth is that it is an addictive drug that can have devastating effects on people's health. It pours money into government coffers but that money is negated by the cost to the NHS of treating people with alcohol related illnesses. It can destroy people's lives. If you want to get resveratrol which is supposed to be good for us, you can eat red grapes and probably black ones as well.
I do agree with you about getting a second opinion if you think you may have cancer. I agree, as well, that pestering or as I see it, just not taking 'no' for an answer is a good way of getting doors open. We must never be afraid of the medical profession and they are there for us.
I do hope you got your tooth sorted out. Teeth and gums seem to be a problem as you get older. I sometimes wonder whether dentists are messing our teeth about too much.
It looks as though we shall never know what happened to Marias, Hanieh and indeed HelenLouise. It looks as though Mary may have problems as well or that she as decided not to be a regular poster anymore and Kath may just be too busy. I do understand all this and I do wonder about the usefulness of this thread anymore. There are pictures to click on all the threads now and so much information is there, not to mention all that you can find on the section 'All Topics'. There are not many views on our thread now and the TNs has virtually disappeared. I think we should all take a break.
Thinking of you and Michael and wishing you all the very best.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your PM. I do agree that we should now take a break.
It could well be that Mary is not very well. I think she probably overdid things with all the renovations etc.
I was glad to know that you managed to keep your tooth. You must have a very good private dentist. We have a private dentist as well, but he is new to us. The one whom we had for twenty years sold his practice this year and we are not so keen on the new one. Dentists are in short supply even in private practice.
It is a very wet and gloomy day here in Exmouth. As for the news it gets worse and worse. We so badly need an election. The new Prime Minister has no mandate.
That is all for now. I do hope you get some time to yourself.
Keep safe, keep well and keep sane. Best wishes to Michael.
Love.
Sylvia xxxx
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Hi Gill and Sylvia,
Thank you for all the posts. It's nice to hear how you are doing. Though I am very busy with work, I like to hear how you are getting along.
I was a little overwhelmed when I first went to Chris Woollams' site. But I'll take your advice and sign up for the newsletter. That will be a bit easier to manage.
I was thinking that in school and in life, I feel like I have so many resources. I know that it's good to have all the resources. But I (and many other people) don't have the time to sort through everything. All the information can be overwhelming. How to you discern what is good and what is just fodder? The source helps, but there are many disagreements in the medical field about what to do or not do. It's the same in school. We have so many resources. If I tried to use them, I'd spend every waking hour trying to sort through them. It's very overwhelming.
It's so good to have recommendations from others. So thank you for the CancerActive recommendation.
Alcohol is one of those things that tastes terrible to me. I was never a big drinker before cancer, so it's not a huge change for me. I tried some wine on Thanksgiving, but it was still bad. Beer is okay, but I never really liked the taste of it much before. I manage with water and tea mostly.
I've been a bit disappointed about the sugar because I always bake Christmas cookies for the holidays. My sons have both been asking. I'll probably bake. But I decided to send them recipes and told them to try their favorites themselves this year. I think I did the same when my grandmother was alive. She'd always bake and then one year when she was not well, she send me copies of all the stained, hard to read recipes. It took a lot of phone calls, but I finally got it. Thinking about it, I should have sent my boys the original copies from my grandmother :-)
Stay well and healthy!
Love, Sue
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Hi Sue,
It sound as though the education system in today's America is as overcrowded with 'must have' information from experts as our own. When I first began teaching the only resource I could draw on was the advice of my very experienced colleagues. I needed more guidance, more resources and some sort of consensus regarding best practice. Now we find ourselves at the other extreme, overloaded with information, research and resources, with no time to make sense of it all. My daughter assures me that doctors in general practice are equally overwhelmed. The form filling and 'essential' reading and testing is overwhelming.
I didn't drink alcohol for over a year post chemotherapy, just didn't feel like it. Eventually I found that I actually enjoyed a glass of wine when having a meal out. I couldn't touch anything even slightly sweet and just plain water tasted strange for many months after treatment had ended. My sense of taste was probably the last thing to recover. I also found that cooking was no longer something I enjoyed, in fact it took a while for me to actually like eating again. Every single cell in our body was poisoned, mostly time heals the damage, but it takes a lot longer than the medics would have us believe.
The run up to Christmas is probably the most enjoyable time in the school year, so have fun. As always, don't overdo things and listen to your body.
Keep safe and well.
Love,
Gill xxx
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Thanks Gill,
The most difficult thing for me right now is fatigue. The taste issues are there, but I think I'm getting used to them. I. try things when I want. But I agree, it's really taking a long time. I'm a patient person!
I'm really tired after a long day. I try to read at night, but it doesn't work very well or for very long, I fall asleep early and wake up early. There are some days that are better than others. I'm guessing it will resolve itself before too long. I still have 2 immunotherapies left. That makes me tired as well. But I feel more healthy than I have in many months. My body just feels invigorated--that is until about 8 or 8:30 at night.
The oncologist also says my numbers look really good and he is happy with my progress. I check on my labs on the portal and the bloodwork numbers do fall in the green ranges, so I guess he's right.
The upper respiratory illnesses are really spreading here. Though my class is healthy again, many of my colleagues are falling ill. I had a flu shot and I wash my hands almost to obsession during the day. So I'm hoping I don't develop anything that would keep me home. I also have masks at school for going into larger groups of people. My parents have donated disinfectant wipes. Every day after the children leave, I put on gloves and wipe down their tables. I try to keep everything very clean!
I also did a few lessons with the children about hand washing. I tell them to keep their hands clean. I'm not a big fan of sanitizer, though it is necessary at some times during the day. I just prefer washing my hands.
I'm sure the doctors have just as much paperwork as I do. The online portals must be maintained and that involves them too. I don't know how we all keep up. The information age is so overloaded!
Keep safe and healthy!
Love, Sue
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Thanks Gill,
The most difficult thing for me right now is fatigue. The taste issues are there, but I think I'm getting used to them. I. try things when I want. But I agree, it's really taking a long time. I'm a patient person!
I'm really tired after a long day. I try to read at night, but it doesn't work very well or for very long, I fall asleep early and wake up early. There are some days that are better than others. I'm guessing it will resolve itself before too long. I still have 2 immunotherapies left. That makes me tired as well. But I feel more healthy than I have in many months. My body just feels invigorated--that is until about 8 or 8:30 at night.
The oncologist also says my numbers look really good and he is happy with my progress. I check on my labs on the portal and the bloodwork numbers do fall in the green ranges, so I guess he's right.
The upper respiratory illnesses are really spreading here. Though my class is healthy again, many of my colleagues are falling ill. I had a flu shot and I wash my hands almost to obsession during the day. So I'm hoping I don't develop anything that would keep me home. I also have masks at school for going into larger groups of people. My parents have donated disinfectant wipes. Every day after the children leave, I put on gloves and wipe down their tables. I try to keep everything very clean!
I also did a few lessons with the children about hand washing. I tell them to keep their hands clean. I'm not a big fan of sanitizer, though it is necessary at some times during the day. I just prefer washing my hands.
I'm sure the doctors have just as much paperwork as I do. The online portals must be maintained and that involves them too. I don't know how we all keep up. The information age is so overloaded!
Keep safe and healthy!
Love, Sue
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