Calling all triple negative breast cancer patients in the UK

rosiecat · March 2023

Hello Sylvia and Mary,

I've a few free minutes to write back to you both. The archive may as well be full time now. Full time without pay! Sylvia, Michael and I were appointed by the Bishop to look after the existing archive and collect and catalogue the history of the entire Diocese, this covers three counties. We also have people asking us to research particular pieces they might be interested in. There are meetings too and I'm not a fan of meetings - or committees and avoid both whenever possible.

Junior doctors are on strike here and the Secretary of State has said that they don't want to talk, when in reality he has refused to meet them. It's all lies here now. There's no-one in Government we can trust and we have lost our trading partners as the docks are tied up with the paperwork resulting from brexit and the roads out of Dover are blocked with lorries. The UK is collapsing.

As for my heating, I think that people living out in the countryside without gas, should be allowed to keep their log burners to heat their radiators and provide hot water. I have no idea what we'll do. Life is so stressful for most of us here.

I think the connection between high sugar levels and cancer is pretty well established, though so many people don't seem to realise this, even those who have had cancer, or family members with cancer. Alcohol should be avoided as it's very high in sugar. Obesity increases oestrogen levels which can result in oestrogen fed breast cancer. Has binge drinking in young women resulted in the rise in breast cancer? People could help themselves stay healthy much more than they do.

I have a feeling that we won't hear from Helen Louise again. She was extremely unwell when she last commented. I miss her as she went through so much, but always stayed positive and enjoyed life, especially her garden.

I will leave it there. Keep well both of you and stay warm. Sylvia, please my regards to Raymond.

Love,

Gill xxx

sylviaexmouthuk · March 2023

Hello Gill,

I do not envy you doing all that work with the archive. I do hope you do not sacrifice the cruise that you were planning this year. With all that you have been through I think you have earned it.

I still wonder where we are going in this country. The mess is unbelievable and yet the politicians do not seem to care. Every aspect of the state seems to be in a mess and absolutely nothing works. It seems like one big hoarders room in which the only solution is to throw it all out, have a deep sanitation cleanse and start again. I dread to think how many errors there are in all the records pertaining to the citizens of this country. I would love to be able to claim my own hospital and GP records because I am certain that there are errors in there. Raymond and I have spotted errors in our GP records, have pointed them out but do not really know if they have been changed.

I think that, at the moment, the government is playing a sly game of divide and conquer by talking to some strikers and demonising others. They are playing the sucking up game to dupe people into voting for them again. The opposition is playing games and sitting on the fence as much as possible, with jam tomorrow, but there is not much difference between the parties. I am certainly not going to take part in any elections. They are all a lot of hypocrites.

I think you are right about high sugar levels and cancer. Sugar is an addictive drug. I agree with what you say about alcohol as well and also about obesity, oestrogen and breast cancer. I also agree that people have to learn to take better care of themselves. Swallowing a pill is not going to solve the problems.

I think you are probably right about HelenLouise and the fact that she was extremely unwell. It is so sad.

The weather is slowly improving and there are signs of Spring everywhere. There is too much building going on in Exmouth and the properties being built are beyond the reach of ordinary people. Green areas are disappearing in order to build expensive second homes for rich people. No one in authority seems to care about overuse of water and electricity supplies etc. Schools and medical facilities do not follow on to cope with the supply of second homes. I suppose the local councils just lick their lips for more council tax. It is all so short sighted. As for Exmouth, the town, it is oversupplied for eating and drinking places but in very short supply for everyday necessities. It is nothing like the nice little seaside town that we moved to in January 2002.

That is about all for now. I am wondering what the forum will look like after March 23^rd.

There is not much activity really and I think people like adagio have disappeared for ever. It seems we are just the two of us, Mary and Sue. Calling all TNs which really started all of these threads is just a shadow of its former self. I often wonder what has happened to Titan, who inspired me to start this thread.

Thinking of you and Raymond and I send you and Michael our very best wishes.

Sylvia xxxx

deltag · March 2023

Hello Sylvia, Gill and Mary and anyone else

I didn't know if I would be able to read or write on the forum - but here I am. Really just to say hello and it is good to see that you are all doing as well as you are. I am hanging in - surviving I guess - but things could be much worse. Breast cancer rarely enters my head - because heart issues supercede - and I am alive and doing reasonably well. Getting to see a doctor here is very challenging even with heart issues. My cardiologist has told me my case is too complicated for her so now I am without a cardiologist - but my kind surgeon has said he will order my echograms once a year and he will do a phone call with me. Not wonderful but.... I am working on looking for another cardiologist.

Life in Canada is grim - food prices are soaring, housing is in short supply - the government tells us there is a recession coming. There is also a shortage of doctors - so we are told.

It has been a long cold winter here in Vancouver - but the last couple of days we have had a taste of warmer weather and some sunshine which has really helped the general mood. Another month and we should be into Spring weather for sure.

Wishing everyone a happy transition to the new web pages and hopefully I can check in sooner next time. Take care and look after yourselves - we are all so worth it!!!

rosiecat · March 2023

Hello Sylvia,

The weather's warming up in Norfolk and it hasn't rained for the last few days. Norfolk is still desperate for water as last Summer was dry for months and our geological infrastructure means that water is not stored.

We do still intend to go on the cruise, but the planning is frustrating and taking up time. Cunard have gala nights when the men wear formal dinner suits and women wear long gowns. Neither us will going to them!

The archive is very time consuming, but Michael does far more than I do and enjoys it. However we often miss out on sunny weather and days walking on the coast, which is frustrating. Our son stayed last week and we're seeing our daughter, son-in-law and grandchildren from Friday until Wednesday next week. I'm very tired and really need some time to rest.

I Don't know if you saw the news about the contraceptive pill last week. It seems that the pill thought to be less likely to increase the risk of breast cancer is now considered an equal risk. I've never taken it, neither have I taken HRT. Messing about with hormones, unless absolutely essential has always seemed too great a risk.

I'm sure my hospital and GP records are anything but accurate. I read some of my hospital records and they were full of mistakes. Saying that I'd refused a blood transfusion, when I'd had one a few days earlier seems a fairly serious mistake to make, particularly If, in a few years time, it was discovered that I'd been given infected blood. I asked for the records to be corrected, but who knows whether they were?

I expect you saw Johnson lying his way through the Privileges Committee investigation yesterday. He thought he was following the rules because somebody had told him he was. He made the rules and repeated them on the daily covid bulletin for weeks. What a mess the country is now in because of this man. I fear for our future and it's almost certain that we'll be paying for our own healthcare before the year's out.

I do hope that you and Raymond are enjoying the Spring weather and the trees and shrubs coming back into life. I know that the better weather means that Exmouth's holiday season will begin. Polluted beaches might be a deterrent this year though.

Keep well both of you.

Love,

Gill xxx

rosiecat · March 2023

Hello Deltag,

It's good to hear from you again. I was pleased to learn that you rarely think about breast cancer these days, but then I read about your heart issues. It's especially concerning that your former cardiologist has told you that your problems are now too complicated for her to deal with. I hope a specialist is found for you very soon.

Life in your part of Canada sounds pretty much like life here. Hospitals vary a lot, but mine is so short of money that it's failing in aftercare for breast cancer and the cardiology department waiting list is frighteningly long. There's a shortage of doctors and nurses here, food prices are very high and heating is becoming unaffordable. The Conservative Government is the worst Government in living memory and full of crooks lining their own pockets.

The Spring weather should at least make life a little easier here and in Vancouver.

Take good care of yourself.

Love,

Gill xxx

sylviaexmouthuk · March 2023

Hello Deltag (adagio),

It was so nice to see you back on the thread. I shall answer more later.

Hello Gill,

I shall answer yours later as well, It has been a busy week here once again.

Have you noticed any differences here on the forum since we have 'migrated'?

Love

Sylvia xxxx

sylviaexmouthuk · March 2023

Hello deltag (adagio),

I was surprised to find that you had been able to get back on the thread.

I was sorry to read that you are having heart issues that supersede any thoughts of breast cancer. It was good to know that you are doing reasonably well.

I was not surprised to read that it is difficult to see a doctor in Canada, as everything in the Western World seems to be like it is here in the UK. It is appalling that it is difficult to see a doctor, even with heart issues. How can a cardiologist tell a patient that her heart issues are too complicated for her and that you find yourself without a cardiologist? What does this mean? Do we now have levels of cardiologist? It is bad enough having levels of nurses and goodness knows what else. At least you have a kind surgeon to help, but it all sounds very odd!

Raymond does not really get any care here. He has never seen the cardiologist in Exeter who was supposed to be in charge of him when he left the London hospital after his triple bypass. He wrote a letter to this cardiologist requesting some rehabilitation on his leg but he never received a reply. All he has is a check on his pacemaker by someone calling herself a Cardiac Physiologist and that is because his pacemaker was identified as from a batch of them with possible faults!

Life in Canada sounds grim and it is exactly the same here in the UK. We are in a cost of living crisis with food prices rising and lots of items unavailable. Nothing here seems to work, the government is useless and we have open borders. It is indeed Broken Britain! Never mind, all will be well on May 6^th when we get the outdated ceremony of Coronation Day.

We are overpopulated, bursting at the seams for such a small island and yet a shortage of doctors, teachers, and qualified people of all descriptions. It is unrecognizable to me and Raymond as the country in which we were born.

It has seemed a long miserable winter here, but of course not as cold as the temperatures in Canada.

Let us see if we can notice any difference with this transition to new webpages. I cannot see any at the moment. It would be nice if this transition, or 'migration' as it is being called, brings back more members of our group. There is not a lot of posting going on at the moment.

Mary still posts, Gill is a strong poster, and we also have Sue and Kath from time to time. Many have vanished. It would be good if we could have a get together online and find out what other former posters are doing.

I continue to live for the day as I head towards 18 years since diagnosis, which is not bad for someone who was told it was not a good prognosis because tamoxifen was of no use for my kind of breast cancer. One Registrar replacing my usual oncologist intimated that I did not have long to live! I still do not take anything for granted.

Thinking of you and sending love and best wishes.

Sylvia xxxx

sylviaexmouthuk · March 2023

Hello Gill,

I was glad to read that you still intend to go on your cruise and I do understand about avoiding Gala Nights. We would be the same if we went on a cruise, but a cruise is just not our scene.

I was glad to read that you had had your son for a visit and that your daughter and family will be visiting. I hope you will manage to get some rest at some point.

Like you, I do not believe in messing about with hormones unless it is essential.

I do wish Boris Johnson would disappear from the scene and lose his seat. He is a disaster and says something that a person like him got a majority. What does it say of the people and there are those who still want him back!

The weather is still mournful here and does not make you full of cheer.

It is good to hear from deltag (adagio). It looks as though Canada has gone downhill in the years since we left.

That is about all for now.

Love and best wishes.

Sylvia xxxxa

sylviaexmouthuk · March 2023

Hello Gill,

I am posting because something has gone really wrong with our thread. I checked yesterday and found that all our posts from the first one back in 2010 when I created the thread, have disappeared. There is absolutely nothing. Would you please post to me on the thread to see what happens.

I have been in touch with the Mods and they say they are not seeing what I am seeing, which seems to mean that our thread with all the posts from the very first pages are visible to them but not to me.

I shall be very annoyed if nearly 13 years of work has disappeared.

Thinking of you.

Love and best wishes.

Sylvia xxxx

sylviaexmouthuk · March 2023

Hello Gill,

I am posting again to say that when I posted to you all the posts suddenly appeared!

Please post to make sure it works.

Love.

Sylvia xxxx

rosiecat · March 2023

Hello Sylvia

Just dropped in to say hello at the end of another exhausting week. First our son visited to celebrate Michael's birthday, then we went up to the Midlands to visit our daughter, husband and grandchildren ‐ I think I said that they were travelling to us, but it was the other way around. I do hope your week has been a little quieter than ours.

I missed all the fun with the new set up here. I dislike change when it's not absolutely necessary. You must have been horrified to see all the comments of 13 years suddenly disappear.

My daughter's surgery was broken into and vandalised a few weeks ago, then last week graffiti was sprayed all over the outside walls and threats made to a doctor. The staff know the patient responsible, but the police won't arrest him due to a lack of evidence. This person put the outside cameras out of action, so there's no cctv pictures. All the female doctors and staff are going around in pairs and no-one is allowed to work for more than an hour after evening surgery. Apart from the disruption, everyone is constantly looking over their shoulders and waiting for the next attack. The police have been useless.

I've just looked to see if there's anything new being offered for metaplastic breast cancer. There isn't, but it appears that women who are given radiotherapy after their lumpectomy or mastectomy are surviving longer than those who aren't. Chemotherapy appears to make little difference to outcomes. Too late for me and I'm not going to worry about it.

I hope Raymond is having less pain when walking these days and your cousin is coping and still receiving care in his home. It's a long time since you mentioned him.

Take good care of yourself and try to have some quiet time with Raymond over the weekend.

Love,

Gill xxx

sylviaexmouthuk · April 2023

Hello Gill,

Thank you for your latest post. I do appreciate it when I know that you are so busy. Raymond and I always seem to have too much to do and I am forever making lists of things to do but the list never seems to get shorter.

Like you, I am no fan of change and do hope the forum will now settle down. I think technology is getting out of control and wonder where it is going. It is getting more complicated and long-winded than the average person can handle. I do not like artificial intelligence. Human beings need a purpose in life and this is being taken away from us. Most of it, it seems to me, is in the name of the already rich making more money and of the powers that be robbing us of our freedom and privacy.

I was appalled by what you wrote about your daughter's surgery. What a horrible country we have become.

Doctors should not have to work under such conditions. I think the police should have arrested this man and put him through some clever questioning. They are too busy making sure we do not make any comments not approved by the Woke brigade! It seems that people getting murdered is an everyday event now.

As for breast cancer treatment, I did hear something about a way has been found that will enable doctors to tell who is likely to have recurrence etc. and those who will not. Those who will not have recurrence will not get chemotherapy. I have explained that in a vague way because just heard the tail end on the radio recently, but not mentioned since. I have not had time to research it. I do not know whether I as a patient would trust that.

My oncologist always spoke of chemotherapy treatment as palliative. My chemotherapy which I had before the mastectomy, and for six months, was explained as being done to shrink the tumour and to make surgery easier and safer.

As for radiotherapy, which I had for three weeks with boosters, was explained as being done to mop up any stray cancer cells which might have escaped.

I think that the radiotherapy is very important but not without danger.

We have to accept that radiotherapy and chemotherapy have nasty side effects, which can be permanent but we just have to learn to live with it. Breast cancer is not an easy journey. After nearly eighteen years since diagnosis I still have neuropathy mainly in the feet and some lymphoedema in the right arm where I had the right breast removed. I was told they are permanent side effects from damaged nerves and damaged lymph.

Remember I also had a mole removd from my right arm, which was diagnosed as malignant melanoma and I think that was the result of radiotherapy.

Raymond and I have been having some stressful times. We are still supporting my cousin in London from Devon. He has been in hospital for the past three weeks for treatment with a nasty infection due to a diabetic foot problem. For the past week he has been waiting for a bed to become available at the Royal London Hospital. Last night we were woken up by a phone call from the first hospital to say a bed had become available in the other one and they were in the process of transferring my cousin by ambulance. We have spoken to him this morning and he is waiting for an angioplasty. His dementia is getting worse but at least we can still communicate with him.

Raymond is doing alright and we are trying to get a face to face appointment with the doctor to review his medication and a check up. It seems to be more and more difficult.

That is about all for now.

We have not got very far on our list today!

Love.

Sylvia xxxx

rosiecat · April 2023

Hello Sylvia,

I wonder if the information you heard on the radio was a reference to the oncotype dx? It's been widely used in the US to ascertain whether cancer patients need chemotherapy and which treatment would be most beneficial. I think it's being used here now, but I don't know of anyone who's been offered it.

Your cousin in London is at least getting treatment, it would have been much slower had he been living in Norfolk. I dread growing old here as the hospital's are really struggling. The Government has made no effort to retain medical staff, quite the opposite. I was reading something about suicides in the nursing profession. The pressure is getting to be too much for some. I know junior doctors who are working very long hours in poor conditions are terrified of making mistakes. The NHS will be sold off this year and certainly before the next General Election.

You must be concerned about sorting out Raymond's check up. He did undergo some very serious surgery after all. Medication checks are never done face to face here. Sometimes I have a phone call from a GP, but usually nothing.

Palliative chemotherapy was sometimes offered to patients in the hospice here. I remember one patient opting for additional chemotherapy and it actually gave here six months of extra time. I don't think it would have been my choice. The permanent damage to my energy levels hasn't become any easier to cope with and I'm exhausted a lot of the time.

The weather here has been very Springlike, sometimes windy, other times bright and sunny with a few quick showers. It's still very cold at night though. I expect it's slightly warmer in Exmouth.

The tourist will be back in Devon at Easter, unless your beach has been polluted with raw sewage like so many beaches here. It makes me wonder if we'll have a cholera outbreak this Summer. My grandchildren won't be going to the seaside this year as the sea isn't fit to swim or paddle in. Government advice is to swim with your mouth shut! I'm sure medical biologists are advising to stay well away from the sea and rivers.

That's about all for today. Take good care of each other.

Love

Gill xxx

sylviaexmouthuk · April 2023

Hello Gill,

Thank you for your latest post.

I think you are probably right about the oncotype diagnosis. I am not sure what it involves but it must be something to do with your type of tumour. Apparently it is used to decide whether your tumour is likely to spread or recur and help you decide the best kind of treatment. I know when I was diagnosed treatment was largely decided on the size of the tumour.

This morning there was another announcement about breast cancer, prostate cancer etc. and the use of the PARP inhibitor drug, known as olaparib. I think this has already been used for some time but this seemed to be I connection with faulty BRCA genes.

I do share your concern about the state of the NHS. It could so easily be sold off. I do not know how the frontline staff are coping.

I do wonder where Exmouth is going as well. More and more expensive housing is being built here. On the news recently Exmouth was identified as the most popular place to live by "posh Londoners". They are buying up loads of properties as second homes at exorbitant prices. This is no good for ordinary people here. All the money seems to be spent on the seafront by the various levels of government, but the town centre, roads, pavements etc. are neglected. There has been trouble with sewage here in the past. Those that frequent the beach often leave piles of litter.

All in all, in this country, we should not be surprised if we have the plague sometime. This past week there was news of someone catching a tick-related illness and the tick was identified as coming from northern Pakistan.

Today at least the sun is shining but the rain is not far off.

Keep well.

Love and best wishes.

Sylvia xxxx

rosiecat · April 2023

Hello Sylvia,

What a mess we are in. The Government deliberately forced junior doctors to strike. Now they can blame doctors for growing waiting lists, patients' deaths and a broken NHS. All part of the plan to sell it off and pocket the money. I live in fear of a return of breast cancer as I know that nothing will be done. Up until the last few weeks I'd kept it at the back of my mind. I know most of us are in the same boat.

I read that Exmouth beach is now polluted. The river in Therese Coffey's constituency in Woodbridge (not that far from us) is full of E. coli. Government advice for people swimming anywhere in England is to keep their mouths closed. All we need now is for a nuclear power station to spring a leak. Hope I'm not tempting fate!

I won't be watching the Coronation, but do have to attend a street party. I suppose the children will enjoy that part and heaven knows, they could do with some fun.

I read about PARP inhibitors a couple of years ago. Useful for those with the BRCA gene. I don't see anything upcoming for metaplastic breast cancer. Any research must be in the very early stages, or perhaps there's nothing at all happening. Triple negative breast cancer doesn't appear much in the news either. It appears that celebrities with breast cancer make it into the popular press, though they never inform us of type, which is the most important fact of all.

I guessed that Exmouth would be victim of second home owners who push up prices and don't use local shops. These people are a disaster for the local economy and should be taxed out of existence. We have a problem here with people from London and the Home Counties wanting to retire to Norfolk. They force up prices, but also want to buy the bigger 5 bedroom houses and this encourages developers to build more and more large homes at the expense of starter homes or smaller 3 bedroom family homes. It's a disaster for those who work here and desperately need accommodation.

It's sunny here and the garden's looking very neglected. I wonder if you are still looking after the shrubs and plants at the complex?

Keep safe and well.

Love,

Gill xxx

sylviaexmouthuk · April 2023

Hello Gill,

We certainly are in a mess. The Government is being absolutely vile with the junior doctors. We need all those doctors and they should be given what they are asking for. We could do without politicians but not without doctors. Politicians are earning way too much and got an increase in the midst of a cost of living crisis. They have expenses and all kinds of privileged living in addition, as well as subsidised meals etc. They do not have an inkling of the struggles of ordinary people. We have a government that cannot even keep control of our borders.

I can understand your fear of a return of breast cancer. It is something that is always somewhere lurking in our minds. This past week there have been some commentaries on the radio about cancer and it was being said that there will never be a cure for cancer. It seems that cancer is very clever at avoiding anything stopping it in its tracks. It is very adaptable. It was said that the best that can be done is prevention and early detection. Some patients do seem to be able to live for a very long time even with metastases. I have a friend who had hormonal breast cancer which became metastatic and she has been living with it for a long time, over twenty years. She seems to be on and off oral chemotherapy drugs. I think the cancer is mainly in her bones.

We do not hear anything new really about triple negative breast cancer or the different types of breast cancer within hormonal and non-hormonal breast cancer. It seems to me there are more breast cancer drugs on offer than when I was diagnosed back in June 2005, when the taxanes seemed to be new, at least for breast cancer. It was the taxanes that seemed to have the worst side effects. I was told by my oncologist that they had caused my neuropathy in the feet and that it is incurable. I am still very aware of it in my feet. I seem to remember reading that taxanes contributed to lymphoedema as well, something else that I was told was manageable but incurable.

I certainly will not be participating in any celebrations for the Coronation. I think the monarchy is out of date and is not compatible with democracy. Our country is old and antiquated and needs completely renovating.

Here in Exmouth it is calm, sunny but cold. It is better than the wild day we had yesterday.

This forum seems to be in need of a good dose of energising potions. Have the trials and tribulations of this nasty world knocked the stuffing out of it? Let us hope our own little tribe will pop back in, awakened and invigorated by the signs and feeling of Spring.

I am still looking after the grounds with our gardeners, but am not doing as much gardening as I used to. It is good to watch everything coming alive again.

I hope you had a good Easter break and that you and Michael are looking after yourselves.

Let us keep our fingers crossed that some kind of sanity will creep into this world. It is well overdue.

Love and best wishes.

Sylvia xxxx

hope445 · April 2023

Hello Sylvia:

Hope you are doing well! My wife was diagnosed with TNBC in April 2020, it has been 3 years, cancer was eradicated by chemo and radiations. I am now a bit worried because most websites say that TNBC recurs in 3-5 years; In your message signature you have "Let your food be your medicine and your medicine be your food". If you don't mind sharing, what kind of dietary changes have you made. My wife is following a diet recommended by her dietitian which includes, avoiding Gluton, red meats, sugar, sticking to morning regimen of seeds left over night in water.

Thanks & Regards,

Prab

moderators · April 2023

Hello, Prab, and welcome to BC.org. We are very sorry to hear of your wife's diagnosis, but glad you found our community. We're sure you'll get Sylvia's and others helpful responses here soon, but we'd also like to share with you our Caring for Someone with Breast cancer forum, specifically, the Husbands Corner thread. The purpose of this topic is to allow spouses of people with breast cancer to discuss their own personal experiences in dealing with the disease.

We hope this helps! We look forward to hearing more from you and your wife.

The Mods

sylviaexmouthuk · April 2023

Hello Prab,

Thank you for your post. I was glad to know that your wife has been doing well and that her TNBC was eradicated by chemotherapy and radiation. Try not to worry about what websites say about recurrence. It is best to take each day at a time and regard each day as a bonus. I would be interested to know what type of breast cancer your wife had. The triple negative breast cancer diagnosis is the tumour status but there are different types. For example mine was a common one, invasive ductal carcinoma (IDC). Gill's was a rare type, metaplastic breast cancer, not to be confused with metastatic breast cancer, which means it has spread to other parts of the body.

As for healthy eating, my husband and I follow what is known as the Mediterranean/Rainbow diet. We eat oily fish, lots of fruit and vegetables, and try to have good portions of raw food, raw nuts, especially walnuts, Brazils, almonds and cashews. Unsweetened soy drink and soy yoghurt that are enriched with calcium, canned beans in water, especially red kidney beans and chick peas, not to mention plenty of high fibre wholegrain bread. We eat 100% Montezuma dark chocolate.

We do not eat meat, and not much seafood except some cooked prawns. We avoid all dairy products and sugary or over-processed foods. We do not drink any alcohol.

We have been following this healthy eating for a long time and trying to get a good variety of these foods.

I am sure we would all be interested in more details of your wife's special diet.

Wishing you and your wife all the very best.

Sylvia.

sylviaexmouthuk · April 2023

Hello Prab,

I forgot to say that we also drink lots of green tea. Our favourite is Clipper Loose Leaf Green Tea. We drink it regularly every day and just drink it plain. We make it in a teapot for two and it gives us two mugs each. We like Clipper products as they are environmentally friendly.

Over the years since I started this thread back in September 2010 we have had lots of discussions about healthy eating, what to emphasise and what to avoid.

Sending best wishes.

Sylvia.

sylviaexmouthuk · April 2023

Hello Gill,

I do hope you are having some relaxation this weekend. In Exmouth we have some rare sunshine which is welcome as there is nothing sunny about the news!

The latest snippet on cancer is about how it is thought that illnesses from way back when remain in our DNA and that they can help combat today's cancer. I do wonder about all this. Days ago we were told there is no cure and the emphasis must be on prevention and early diagnosis. Now we have illnesses from thousands of years ago that may help. Do I hear "Yet another vaccine" coming our way?

A Spring booster is already being pushed for Covid.

Thinking of you and sending best wishes.

Sylvia xxxx

sylviaexmouthuk · April 2023

Hello everybody,

I was just glancing on the forum and I noticed in the Triple Negative forum a thread by the Moderators about vaccines and because vaccines seem to be in the news I started to have a look at it. The article is entitled Podcast: Breast Cancer Vaccines and TNBC. You can listen to this or you can read the transcript. I find it more useful to read transcripts at my leisure. I shall do this as soon as I can.

I was just wondering if any of you had listened to the podcast or read the transcript. Briefly, it is about finding a vaccine to prevent TNBC. Have any of you read it and what do you think of it? Please let us know if you have read it.

Thinking of you all.

Sylvia

rosiecat · April 2023

Hello Sylvia,

Lovely sunny day here again after an equally sunny weekend. I managed an hour of weeding in the garden yesterday. I wish I had more energy, it just didn't return after chemotherapy. As I have had no follow-up appointments for almost three years, I haven't been able to report this to the breast surgeon. I haven't seen an oncologist at all since the end of my treatment. This makes me wonder how well they understand and report on long-term side effects. They can't possibly be giving the patients they're about to treat an accurate picture of what to expect. Informed consent is being ignored.

I know people who live with metastasis, they don't have triple negative cancer as far as I know. I never cease to be amazed by how many women have no idea about their cancer type and their breast surgeons don't see fit to enlighten them. How can anyone just put themselves in the hands of their surgeon, ask no questions and trust him or her to get on with it?

The most recent polls I've seen appear to want the Monarchy gone. The cost of King Charles' Coronation is the final straw for many. People in this country are struggling to pay for food, heating, rates, mortgages and rent and the King throws a massive extravaganza, complete with golden coach and we get handed the bill.

I did read that viruses human beings were affected by many thousands of years ago still remain in our DNA. It's probably a good thing, but there's not enough information yet. Talking of viruses, we are going to be invited for a Spring covid booster very soon. I asked my daughter and she's going to have one and advises that Michael and I should do the same. I'm not so sure. There's still too many people dying from covid and I've seen several people wearing masks again otherwise it would be a definite no from me.

Junior doctors are being ignored and broken. The number leaving increases every week. The selling off of the NHS is no doubt imminent. All going as expected. I simply don't understand why so many working people intend to vote Tory again.

Keep well both of you. I'm very glad that you've cut back on the time you spend gardening at the complex. Maybe you'll be able to snatch some quiet hours for yourselves.

Much love,

Gill xxx

hope445 · April 2023

Thank you!

hope445 · April 2023

Thanks a lot Sylvia! That is very helpful! I will find about the exact type of TNBC. I will also post about the dietitian recommended seeds (which are taken in the morning after leaving them in water overnight, Brazilian nuts, Prunes, Figs are few I remember).

Best Wishes,

Prab

sylviaexmouthuk · April 2023

Hello Gill,

I can understand your discontent with long term treatment after breast cancer treatment. I think, back in 2005, there was a standard pattern that was followed, but it was not long term. It seemed to be that you had some kind of check up that lasted for five years and then you were discharged. It may have been slightly different for non-hormonal breast cancer but not very much. Triple negative breast cancer at that time, at least in the UK, was very new at least for getting attention.

I remember that for about three year I alternated between the oncologist and the breast cancer surgeon for yearly check ups. These check ups were very basic. It was mainly checking the breast area concerned and feeling the good breast. I know that over my mastectomy area I was told they were looking for everything to be smooth, and no sign of a rash on the mastectomy line, which could be a sign of recurrence or spread. Obviously there was a three-yearly mammogram.

I remember that, after three years, the breast cancer surgeon discharged me from seeing her and I just used to see the oncologist yearly. I thought I would be discharged when the original five years was up. However, the oncologist kept me on for another five years and then discharged me. I think getting ten years of check ups was probably due to being non-hormonal (so no drugs available) and being triple negative. I have no idea what goes on with check ups now because the NHS is on its knees.

On being discharged after ten years I was told that, if I wanted a mammogram check up I would have to arrange to have it at the mobile unit when it came to Exmouth. I have not done this.

I do my own beast check ups at the beginning of each month. I still do not take anything for granted and I think the older you get and your immune system is not as strong, you are somehow more likely to get another primary or spread. A neighbour here got primary breast cancer in her nineties and one of my sisters in law got it in her eighties. I think both of them found it very tough.

As for long term side effects, I think you probably get advice and there are ways of getting some treatment. I know there is a lymphoedema clinic at the RD&E hospital in Exeter. I went there for a short while, but it is basically learning to do exercises after they have shown you how to do them. You have to be on the lookout for cellulitis, especially if you have to have any procedures. I did join the lymphoedema society but I have not had a subscription there for some time. I did get a card when I joined which I carry on my all the time in case of accidents.

As for neuropathy in the feet, I have regular check ups with a podiatrist to keep my feet in order, but there is no cure for neuropathy and the same applies to lymphoedema.

I think more and more people are probably surviving after standard treatment and even with metastases. The women I know diagnosed at the same time as me are still surviving but they all had hormonal breast cancer and I do not know what type.

I certainly want the monarchy gone. There is no democracy while you have monarchy and their lavish life style is an affront to the rest of us. I am surprised that the woke brigade is not after all the unacceptable words associated with monarchy. It is too busy altering books and other things that should be left alone.

That is all for today. I am once again working through a list of things to do.

Take care.

Love.

Sylvia xxxx

maryna8 · April 2023

hi Sylvia and Gill

I would add more people to the heading but I haven't read back in the posts because it's been so long since I posted, and now I see there will be a shutdown of the website Monday, I hope we all find our way back.

So on April 1 I set off on a trip with my sis-in-law, I think I may or may not have mentioned I was going here, I thought I would probably receive cautionary warnings. Which as you will see, would have been well-founded. So I had rather a large refund from the NZ cruise trip, and I used part of it and we flew off to Barcelona, and met our ship the next day. Another day and night was spent there in Barcelona, where we were charmed by the works of Gaudi, and the liveliness of the city, and then we headed along the coast to Sete, France, a charming small Port town we didn't explore, instead we were shuttled past lagoons and low country until we climbed to Montpelier, France, which is the Capitol of the region and is a beautiful city with the frequently-seen mix of very old architecture with the new. The Grand Plaza was somewhat marred by a large amount of construction work going on, but still a lovely place, lots of tulips in bloom.

We returned to the ship for dinner and called it a day, because our days started early and we were usually out for 8 or 9 hours. The next day we were supposed to port in Marseilles, but because of riots our port was changed to Toulon, and we were shuttled to Avignon and toured the Palace of the Popes, which I found very interesting since I was ignorant of this time when Popes were French, 7 of them, then 2 anti-Popes, and then Rome took back the Papal power. I was rather proud of my knee, which was having to manage these old stone castles with uneven, steep stairs and rough cobblestones underfoot!

The next day found us in Monte Carlo, that opulent city hanging off the cliffs, we have beautiful pics we took from a helicopter of the multicolored buildings with the rocks hulking overhead, we walked and saw super-expensive cars everywhere, apparently the people who worked there were not allowed to bring a cheap car into the city, we were told everyone who lived in these ornate buildings had the same fabulous view of the sea. We didn't make it to the Palace, but did enter the Grand Casino and saw its splendor.we also got to experience a supercilious French waiter while there on the Plaza and had an overpriced refreshment but oh well, part of the experience!

I will continue this travelogue later, it was very enjoyable and very tiring, we were on the go all day, every day. Probably a bit too much, I came home with Covid and Pam with 2 fractured ribs from a trip-and-fall in an old dim church.

Stay tuned as Sylvia says, I'll try to finish this bfore Monday!

Later, love, Mary

maryna8 · April 2023

hello to all

I did some back reading and saw that Gill is going to take a cruise too, it was a lot of fun but I just think I overdid things a bit. As in I should have rested more.

So anyway, the next day on the travelogue we went into Tuscany and visited a small mountain town called San Giorginano, very beautiful, old and picturesque with unbelievable views. I'm sold on Tuscany, it's as beautiful as I've heard. We then drove to an organic farm/winery. We were served lunch with more magnificent views all around. A lovely day.

When we booked this trip we did not realize that our time included Easter. We were slated to spend Sunday in Florence, but we were told that the churches and most museums would be closed. We also missed our pick-up time at 7:15, wr showed up at 7:45 and had missed it. So we went to church in the Port town of Livorno, and later were driven to the mountain town of Lucca, where we watched locals eating their after-Mass meal of enormous pieces of beef. We were told to eat fresh fish on the shore, but in Lucca, eat the beef, it's what was done. We compromised and ate wonderful pasta with meat sauce.

The next day we were in Rome, and we were shown off the ship, the cruise was going on but we had booked 2 nights in Rome in a hotel.

I am always amazed at Rome, but again we didn't realize that Easter week is Holiday for all school children and many adults as well. We wanted to get a look at St Peter's but it was so crowded. We had a 3-hour driver who drove us to places that were not as mobbed, one was a panoramic view of all 7 hills of Rome. After he left us we walked and walked, so many sights down every turn.

It was the 1st day of Rome when I started feeling off, but kept going nonetheless. On the 3rd morning we headed home, and I reached my door about midnight. The next morning I took a Covid test and it was Positive, so took another with the same result. It hasnt been too bad, lost taste and smell but only for a few days, the other nasal stuffiness and coughing are gone for the most part, what remains is the mild fatigue which seems to be getting better. Today I feel good enuf to post all this, that's something!

While we were still on the ship we did hear there were people who had Covid, but we didn't worry about it since we hadn't had it and felt fine. I don't know what else to say about it since I have no idea where I got it, on shore maybe. All in all it was a most enjoyable trip, though i should have taken a day off in the middle, as I did in Scotland.

I remember oncotype being around when I had TNBC but my doc said it didn't pertain to me. I'm wondering if it's something for the estrogen+ folks that are stage 0 or 1, some of whom receive chemo while others don't.

I hope you, Gill and Michael had a happy Easter, and that you, Sylvia, and Raymond are both doing well and I think it's so nice of you to look after the welfare of your cousin. I hope we don't get lost in the system Monday, and they will retrieve us if we do.

Wednesday I go to see the knee doc, wish me luck there, not sure what will happen next.

Talk to you later, love, Mary

maryna8 · April 2023