Calling all triple negative breast cancer patients in the UK
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Hello adagio,
Thank you for your post and for your very kind words.
I have benefited so much from all the people, mainly women but also the men that have posted, and I think these past nine plus years have been a great education for me.
I have been so overwhelmed by all your kind words that I feel I must try to stay with you all as much as I can. It could be that next year somehow we meet up in little old Exmouth, here in the UK. I know that most of you are still into doing lots of travelling.
I shall always be interested in Canada because Raymond and I spent all those years there. We also had a very enjoyable time in British Columbia and liked Vancouver.
You are one of those who have been on the forum for over seven years now, so you have put a lot of effort into it as well.
I do hope your husband is still making good progress and that you will continue to enjoy good health.
Are you still following Chris Woollams? I see that this latest email has something about mistletoe which is used in Germany for cancer treatment. I took it for five years, prescribed by the Royal Bristol Homoeopathic Hospital by Dr Elizabeth Thompson and in agree emnt with my breast cancer consultant surgeon. I shall always be asking the question did it somehow help me to survive? I remember that Sarah who was posting for her mother obtained it for her. I often wonder how they are getting on. They live in the UK.
I have just discovered that in Iran they have just closed down the internet. It seems impossible. It makes me wonder how Hanieh is doing.
That is all for now. I hope you will continue to pop in when you can.
Love.
Sylvia xxxx
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Hello Pam (lily.p6),
Thank you for your post. I do hope that you manage to find some time for yourself in your busy life. Why is it that we all seem to have too much to do and why is society in such a hurry?
You are quite right about the salad in your dish. I am indeed familiar with rocket which is supposed to be one of those superfoods.
On Wednesday it will be fourteen years and five months since I was diagnosed with breast cancer but it still remains quite vivid in my mind. A diagnosis like this does send you into shock and you have to give yourself time to recover and then to get informed and take charge of your cancer journey. It still seems to me like it was another lifetime, but I still take nothing for granted.
This 2019 has been quite a stressful year and I shall be glad to get to the end of it. I just hope 2020 is better but I feel that in the UK Brexit will drag on. I am not impressed with our Parliament, especially the Government and I do not think the General Election will solve anything. We do desperately need to do something about poverty and homelessness in this country and reduce all the inequality.
I was glad to know that you are reading the Bill Bryson book and would love to know what you think of it. I have found it exceptional and a really good way of getting to know our bodies. The last few chapters of the book were excellent and very relevant to all of us. If you have any other books you would recommend please let us know.
Take care.
Love.
Sylvia xxxx
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Hello Jags56,
It was so nice to hear from you and I do hope you are looking after yourself as you deal with different family problems.
I feel alright except that I have got too tired lately but I hope it will go away. I do not like the gloomy weather we have been having nor the long dark nights.
I have seen on the television the pollution problems you have been having and we here we have been having floods in the north and midlands. It seems that weather patterns have become extreme and we have weeks and weeks of the same kind of weather. The bush fires in Australia and the US have been frightening.
Here in the UK the madness of Christmas is upon us and it really is tinsel land!
There is nothing wrong with your English.
Love.
Sylvia xxxx
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Hello Kath,
Thank you so much for your very kind words.
I was so glad to read that I have been able to help you have some calm and peace. I do remember how worried you were when you first started posting and I was only too glad to be able to help you. We all have some worry at the back of our minds because of the breast cancer diagnosis, but somehow we manage to put it away and get on with our lives.
I admire you so much for the work you are doing and I admire you for all the success you have had with exams in your professional life and you should give yourself a pat on the back!
Take great care of yourself.
Love.
Sylvia xxxx
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As I was leaving work today. Couldn’t get high enough to get it all but this one is for u Sylvia!
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Hello Sylvia,
You sound as though you need much more than a week to overcome your tiredness, so please don't respond to this. Your role as Director has now become more even stressful with the other volunteer off travelling. I strongly believe that stress has the effect of compromising our immune system, leaving us vulnerable to the inevitable Winter bugs, so take care.
The Norfolk and Norwich University Hospital is in a dire financial state and has announced that it has run out of money for the outsourcing of surgery to the private sector for 2019-20. This means that surgery deadlines cannot be met. I fear for the future of Healthcare in this part of East Anglia. My daughter has moved to Nottinghamshire and her nearest hospital is Queens Medical Centre. Her husband's new appointment is in Leicestershire so she's very glad to be over the border, as Leicester Royal Infirmary has a poor reputation. Her new GP post is in a deprived area of Leicestershire, her choice. She wants to spend time working with homeless people, substance abusers and people coping on low wages or no wages. I think she sees it as an antidote to the wealthy and very demanding patients she dealt with in her last job.
Prince Andrew seems to have knocked Johnson and the General Election off the front page for a short time. Both seem to take the public for fools. I couldn't watch the Prince Andrew interview all the way through, his lies were just farcical. I hope to have more luck with tonight's debate with Johnson and Corbyn. Johnson is still talking about his 40 new hospitals! I hope Corbyn pins him down on the intentional underfunding of the NHS and his relationship with American drug companies.
We had a heavy frost overnight but the sun is out now. Michael has found himself a new cold and sore throat virus. My cough is much better so I'm keeping my distance.
I'm off to look at Chris Woolams' latest news now.
Much love,
Gill X
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Hello Mary,
It would be such bad luck for your shoulder to start playing up again, that I don't believe it will happen. Candles still being lit for you at the end of Mass. The Catholic Cathedral has just upped the price of candles and must be making a good profit since I joined community.breastcancer.org. It could do with the money as the heating (run on wood chips) has broken down. This happens every year at this time. To add to the misery the electrics are also on the blink.
I'm always perplexed that oncologists usually ask patients to stop taking antioxidant supplements during chemotherapy, yet never mention those fruits, vegetables and nuts high in antioxidants - the well publicised superfoods. Surely these are more effective than supplements and therefore more likely to cause cancer cells to me be chemo resistant. Too late to worry now!
I hope Sylvia is going to take some much needed time for herself. That would be so much better than her leaving the thread completely. Like you, I don't want to be selfish, but Sylvia IS this thread! I feel very close to both of you and the other contributors.
Keep warm.
Love,
Gill X
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Hello Kath,
Thank you for that most interesting photograph. Have you been on this train? Have you travelled widely throughout Australia?
Keep on looking forward with optimism.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for the great effort that you are putting into the thread.
As for my work as a Director, I do all the communicating with our managing agent, contractors and residents, so I am always on the go!
Would you believe that this morning at 10 am a house clearance van knocked into and demolished a large concrete pergola and this was a crisis. I had to get someone in quickly to make it all safe and for a while one of the moving men had to literally hold one of the large columns up. I am getting it all demolished on Thursday.
I do believe like you that stress compromises our immune system, so it is very important to eat healthily, keep physically and mentally active but also find time to relax. In our strange busy world this is quite difficult to do.
I fear for the NHS in general. We never should have started contracting out staff. It has made everything very lax. I think overall the main problem is that we have too high a population for the size of our island. Everything seems to come back to too many people and lack of control. We cannot keep expanding and expanding.
I do hope your daughter will be alright with what she is taking on as her new work. I think she is going to find this new work just as demanding. I do not know very much about all these hospitals but I think they are probably all suffering. I know that the Royal Devon and Exeter Hospital is excessively busy.
I agree that the Andrew Windsor interview was a pantomime. I suppose it will all get wiped out in the end. We have all these pieces of news that are left hanging, such as the journalist who went into the Saudi Arabian Embassy for a routine matter and disappeared. We also have the poisoning in Salisbury and the disappearance into thin air of a man and his daughter!
I shall probably watch the debate tonight but I am not expecting great things.
With all that is going on and the virtual destruction of everything during ten years of Conservative rule, it is unbelievable that Boris Johnson is leading in the polls. It is said we get the government we deserve.
I have been looking at the last two emails from Chris Woollams. There is so much information in these two emails that I decided to concentrate on just a few. They are as follows:
November 11th email.
3. Top polyphenols for health. You have to click on Polyphenols – top foods for health.
November 18th email.
1. The antifungal treatment that fights cancer.
It is a broad spectrum antifungal treatment with few side-effects yet it increases cancer-free progression, increases cancer survival and reduces chemo-resistance.You have to click on the Anti-fungal that treats cancer.
11. How to make your personal, all-natural antibiotic.
It is easy when you know how, and what to avoid. Click on How to make your own natural antibiotic.
12. Mistletoe as an alternative cancer therapy?
Does it 'work'? Is it worth the money? Is there any research? Click on Mistletoe as an alternative cancer therapy.
I have to read all the ones that I have said to click on.
I am very interested in mistletoe as I took liquid mistletoe (Iscador) from diagnosis in 2005 right through to 2010. I had it on prescription from the Royal Bristol Homoeopathic Hospital on the NHS and it was in consultation with my breast cancer consultant surgeon at the RD&E. I have no proof but I like to think that along with other homoeopathic medication at each stage of my treatment it helped.
That is about all for now. Look after yourself.
Love.
Sylvia xxxx
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sure have Sylvia on both counts. It’s the Indian Pacific that we talked about previously. If u make the pic bigger u can see it’s name on the side. It’s on its way back to Sydney from Perth. From one side of Australia to the other. Starts in Perth which is on the western side of Australia at the start of the Indian Ocean And travels over a week through lots of different terrains to Sydney which borders the Pacific Ocean, hence it’s name. If u Google an Australian iconic country and western singer called Slim Dusty who wrote a song called the Indian Pacific. it tells the story of its travel and it’s actually really well done
Cheers
Kath
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Hello Sylvia,
It sounds as though the concrete pergola incident could have been extremely dangerous. What a nuisance for you though. Hope the demolishers arrive today as promised, I find that waiting for workmen/women to turn up on the expected day at the expected time is a bit hit and miss. It all adds to your workload which seems fairly full on as it is.
I don't usually read everything in the Chris Woolams newsletter but there's usually something of interest. I was particularly interested in the broad spectrum antifungal treatment. Metaplastic cancer is generally considered to be chemo resistant, this may help to make patients with this subtype feel that despite the many side effects, chemotherapy is at least worth the effort.
I watched the first half of the Johnson v Corbyn debate but had to give up as Johnson was stuck in his nonsensical 'get brexit done', 'oven-ready' mode. He was slightly wrong footed when Corbyn produced the almost entirely redacted document concerning the sale of the NHS to the USA, but lied his way out. I fear that people will either not vote or vote for more of the same. A hung Parliament is perhaps the best we can hope for. Our NHS isn't perfect, but it's the most precious thing we have and many people couldn't cope without it. It's in real danger and I wish people would wake up before it's too late.
I'm hoping that your apartment complex behaves itself for a while, that seems rather unlikely with Winter on the way but fingers firmly crossed.
Much love,
Gill X
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Hi all,
Medical news to share. I met with my MO today and we I signed to have the bloodS & other tests done to work out if I have the BRACA mutation in my tumor gene to quality me for the ENHANCE trial in Australia. It is a phase II trial using lynparza (olarparib) parp inhibitor. If I test positive and have adequate progression I may qualify for the trial early next year! Not sure about trial but need to see if I qualify.
I have another skin met on my chest, which is starting to look angry, so we have agreed to do another round of scans ASAP to see what else, if anything might be there. Want to rule out any real nasties in light of our up and coming trip to Japan.
I am excited and nervous! Bloods on Monday, then see RO Thursday, scans when they let me know and back to MO on 12/12. Fingers crossed we are good to fly on 19/12!
Have been reading the news here and hope everyone is doing as well as can be.
Ps. Kath I hope you are surviving in broken hill. Today in Albury NSW 42 degrees, smoky and blowing a gale! Horrid weather but at least we aren’t suffering the fires up on coastal north. Weird to think most on this thread are heading into winter.
Best wishes to all. X
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Hello everyone,
For those who might have dropped in to browse, Sylvia often mentions Chris Woolams' newsletter. Chris Woolams produces a regular e-newsletter, packed full of information on the latest cancer news. Sylvia introduced me to it soon after I joined the thread and Mary also reads it. It's free and you might find it useful. It's worth signing up for. The regulars here probably already know about it.
Gill x
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Hello how have you been. I stronger the treatment of intravenous Gemcitabine and carboplatin was suspended. They made me the petscan and in the results I appreciate that the subcarinal and paratracheal metastasis continues but I don't know it has expanded. The lungs look clean. The new treatment is 3 xeloda pills every 12 hours for 14 days. He rests for a week and starts again. In Colombia the critical situation people very dissatisfied with President Duque. Yesterday was a national strike many people went to march, but also to steal so in Cali they gave a curfew order. situation that had never lived in the 56 years. I trust my health and my country stabilizes for a while. thousand blessings to all of You
Abrazos
Marias
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Hi Marias,
So good to hear from you, I know that others will have been wanting to know how you were getting on.
I'm happy to hear that your lungs look clear. I do hope that xeloda is easier to cope with than your intravenous treatment has been. I remember than you were exhausted and unable to manage the stairs to your apartment, fingers crossed that your energy levels have now increased.
I've just caught up with the news from Cali and it seems that teargas was used against protesters. It all sounds very chaotic and worrying. The curfew may help to calm the situation down for a short while at least. You could really do without this extra worry.
Dear Marias, I hope that you have a good response to xeloda and that there are calmer, less worrying times ahead.
With love and prayers,
Gill X
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Hello Gill,
All has been resolved here and everything is very quiet.
With reference to Chris Woollams it is a good idea just to read the parts that are of interest and relevance to you, otherwise you get information overload.
I did not think much of the debate between Johnson and Corbyn. It was all too hurried and arranged. I do not like the fact that women are the moderators all of the time. I think it would have been much better to have Johnson and Corbyn sitting at a table with someone like Andrew Neil or Jeremy Paxman and being questioned at length about their policies and not being let off the hook until they answer the questions. All this showmanship lowers the tone of political debate. I think everything is biased towards Johnson. I think Corbyn is a much more sincere and knowledgeable person and has a much better brain than Johnson. However, I think Corbyn needs to come clean about whether he is for or against Brexit, but in this respect he is the victim of the mixed views of his Labour Party. Until Corbyn comes clean, I think Johnson will continue to be ten points ahead of him. All the public remembers in all of this Brexit mania is the Tory parrot shouting Let's get Brexit done! I think the result of the referendum should have been implemented last March 29th.
I am really concerned about the NHS. People seem to have forgotten or have never known those most important dates of 1945 and 1948. Without them there would have been no Welfare State and I think that Welfare State has been abused and taken too much for granted.
I understand there is yet another political programme on BBC1 tonight at 7:30. I do not suppose there will be much improvement.
That is all for now. Have a good weekend.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for that information. I am going to Google Slim Dusty and find out about that song.
It is raining and raining here in Devon and it is so miserable. There is apparently a yellow warning out for yet more rain in the South West of the UK.
That is all for now.
Love.
Sylvia xxxx
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Hello helenlouise,
thank you for your post. I do hope that you have good news from your bloods and other tests and I do hope that you do not have the BRCA mutation in your tumour. Whatever the result take your time before making any decisions.
I was sorry to read that you have another skin met on your chest which is not looking good. I do hope you get the scans quickly and that you will have good news. You need to go off on your trip to Japan with peace of mind.
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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Hello Marias,
It was good to hear from you. We have all been missing you on the thread and wondering how you have been getting on with your health problems and all the problems in your country.
I was glad to know that you are no longer having the drugs Gemcitabine and carboplatin because they were making you feel so ill.
From your post I understand that you had a PET scan and that the result shows that metastases continues, but you do not know whether it has spread further.
It is good to know that the lungs are clear.
From your post I understand that you are now on a new treatment and that you are taking three pills Xeloda pills every twelve hours and that you will be taking these pills for fourteen days. After this you will have a rest for one week and then you will start the Xeloda pill regime again. How long will you be taking these pills all together? Your body will surely need a rest from it all in order to build up strength.
We are getting news about the problems in Colombia and it is so sad. Every time I look at the news on the television I see ordinary people out on the streets protesting against leaders and/or governments. It seems that power definitely corrupts and that leaders on the whole tend to lead the high life and forget about ordinary people.
I have also been following the news about Bolivia and I am disappointed in the way Evo Morales has been treated. He has done a lot of good for his people and I do admire the indigenous people of that country. So many of the problems go back to Western Colonialism and that is still going on. It is shameful what the West has done over the centuries to indigenous people worldwide.
I do hope that your health will improve and I do hope that peace, stability and fairness will come to your country.
Take care, Marias.
Abrazos.
Sylvia xxxx
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Hello everyone,
Another weekend is upon us, so I just wanted to wish you all a happy and relaxing weekend.
Mary, I hope all is well and that you are making progress with your arm.
We have so much coverage of the Impeachment Hearings here that it seems that these hearings have taken over the air-waves and if you want to escape them the only alternative is our General Election coverage, which is mainly Brexit.
Hello adagio, please keep popping in.
Nancy53, I hope all is well. We have not heard from you in a while.
Val in America, where are you?
Hanieh, I hope all is well in your troubled country.
Jags56, keep popping in to say hello.
Best wishes to all.
Sylvia xxxx
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Hello all,
I don't know if anyone has noticed that the moderators have very recently added a useful update on chemo brain, a podcast on cancer-related cognitive decline. Most of us use the term 'chemo brain' which, as it turns out, isn't entirely correct - people can suffer cognitive decline after cancer even if they haven't been treated with chemotherapy. If you're interested it can be found here in 'Managing Side Effects of Cancer and its Treatment'.
Gill x
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Hello Kath,
Thank you for the mention of Slim Dusty. I did look up the information and found it all interesting.
Last night I put the television on expecting to find the next part of Great Australian Railway Journeys and found it had been replaced by a football match! I was very disappointed. I hope it will be on next week.
I hope all is well with you.
Love.
Sylvia xxxx
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Hello Sylvia,
Thank you for your last post to me. I couldn't agree more about letting Jeremy Paxman or Andrew Neil interview the party leaders. I had hoped that Mr Paxman might come out of retirement especially for the General Election. Andrew Neil certainly has the measure of Johnson. I was looking back at an interview with Johnson during the leadership campaign and it says much about our (now) Prime Minister's aggressive character and talent for evading the truth.
The BBC website has an article about cancer and cardiovascular disease. The European Heart Journal looked at 3 million American patients with different cancers over 40 years. 38% died from cancer and 11% from CVD, three quarters of these were heart disease. There were 6 cancers with the highest risk and breast cancer was one of the six. The risk in the first year could be due to chemotherapy and radiotherapy to the chest area. After that treatments could still be a factor, but lifestyle also comes into it. Whilst more research is needed, closer monitoring is suggested. Our hearts are checked prior to treatment, why not afterwards? I have found aftercare to be virtually non-existent in my area. The London hospitals offer so much more and it's time the postcode lottery was addressed.
Apparently Johnson is visiting Norfolk today, no details of time or place!
Hope the rain has stopped down your way.
Love,
Gill x
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Hi Mary,
Called in to wish you a happy Thanksgiving tomorrow. Just sit back and enjoy your day - no lifting, and definitely no wild dancing! 🥂🍾
Love,
Gill X
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Hello Mary,
Like Gill, I am just popping in to wish you a vary happy Thanksgiving Day. Relax and enjoy it.
I have missed you on the thread and I do hope all is well with you.
There is not a lot to report from here. I am really waiting for the year to be over. I want the election out of the way. The debates are a farce.
The weather here is gloomy and it somehow makes you tired.
Keep well and keep in touch.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
Thank you for the information about the BBC website on cancer and cardiovascular disease.
I did have an ECG before I started my breast cancer treatment and I did have another one after I had finished surgery, chemotherapy and radiotherapy. I also had a CT scan and a bone nuclide scan before and after treatment and I was told all was fine with everything. However, long tern, who knows what can develop? My treatment was plain sailing for me but I did develop peripheral neuropathy not that long after treatment I was told by the oncologist it was caused by docetaxel (Taxotere). I did also develop some lymphoedema all those years after treatment when I had a flu jab in the other arm.
I had ten years of physical check ups after treatment and they finished in 2015.
We cannot know the path that cancer will take us along once we are diagnosed with it. A lot depends, I think, on our state of health when diagnosed and how we choose our lifestyle after treatment to help ourselves. We need healthy eating, some exercise and generally avoiding stress and making each day meaningful. It is important to get on with life and not let cancer possess you.
Did you see the interview last night with Andrew Neil and Jeremy Corbyn? I think Andrew Neil overdid it a bit and that Jeremy Corbyn seemed tired and worn out. He has had no peace since he won two leadership elections. On the whole I think he has been very badly treated because he is not on the side of the establishment. I also think religion should stay out of politics.
That is about all for now. Raymond and I are waiting to set off for dental appointments.
Thinking of you.
Love.
Sylvia xxxx
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Hello Sylvia,
I did see the Jeremy Corbyn interview and would agree with everything you say. Mr Corbyn must be exhausted by the vicious lies about Labour perpetuated by the tabloid press. Johnson appears to have ducked out of his interview with Andrew Neil. Most of the press is run by ridiculously wealthy Tories and naturally biased. These people with their gold plated private health insurance care nothing for the NHS or the healthcare needs of ordinary people.
The Norfolk and Norwich University Hospital has announced that it is in the red to the tune of £20m and has warned that the long waiting lists are pushing services to 'unrecoverable positions'. More than 46,000 people are on waiting lists, this is 9% up on last year. I'm very concerned that if my cancer returns I'll be unable to have treatment in time. I just don't feel safe and neither will anyone else.
I hope that you and Raymond sailed through your dental appointments.
Very wet and miserable here again. Like you, I always feel a bit down and tired at this time of year.
Take care.
Love,
Gill X
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Hi, Sylvia and all,
Thanks for Thanksgiving wishes, and I give thanks for all of you.
I am soon off to my step-son's house for 1:00 meal, and then on the way home will stop at my niece's for another small celebration. With probably another meal! Many overstuffed people will be roaming the countryside, the meaning of the Holiday is beautiful but tends to get "swallowed up" (no pun there!) by all the food.
I have been very busy, when people ask me what I do I say I am either on my way to therapy center, doing exercises there, or doing exercises here. In the meantime, I attempt to keep up with things. This is the time of year when leaves are flying everywhere and have to be cleaned off the entrance to my house, and out of my waterfall feature which seems to be a magnet for them. I am talking a LOT of leaves. I found a young man who did a lot of heavy work in my yard, still more to do. At the same time, there is a situation, business-related, which is requiring a lot of thought for me. I have been sleeping pretty well though, so that's a blessing.
We are having a cold and blustery day, but weather is going to get better in a couple of days.
Greetings to all, and Happy Thanksgiving to all.
Talk to you soon, love, Mary
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The latest dust storm rolling into Broken
Hill today taken from
Our roof! Hate this drought!
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hi Kath
You there seem to have such dramatic weather, not sure how you manage with all that dust!
Gill, I always read with interest what you say about Healthcare in your country. We here are being pushed that way by one political party, and most are not interested. Occasionally the NHS is held up as an example, by some as a good example of Healthcare for all, and by others as a cautionary tale. Our system is a hodgepodge of private insurance mixed with government-run programs. To go to one of our very large Cancer Centers scattered around the country usually requires a sizeable cash outlay. Most people I know who have done this then return home with a plan for treatment that can be followed locally, and will be covered by insurance. It can be very confusing!
Adagio, I hope you are doing very well! My shoulder slowly progresses, it feels more stable than last time around, but also somewhat stiffer. More therapy, the only cure, I suppose.
Sylvia, I have been thinking about Hanieh lately, I wonder if she ever got out of Iran with her family. I have asked about "turning off internet", and apparently that is not very hard for a country to accomplish. Basically just a switch, I would suppose military and other high government people would still have theirs switched on. Anyway I do hope she is okay and made it to Turkey.
Off for now, talk soon, love, Mary
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