Calling all triple negative breast cancer patients in the UK
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Hi Helen,
Good to hear you sounding so happy and positive. You seem to be very much in control of treatment or no treatment. You have doctors who actually listen to you!
I love Spring and Autumn too. Summer's too hot (yes, even in England) and Winter's too wet and cold. I envy you watching your garden bursting into life. Your big reward for all the work you put in earlier. My climbing roses are still doing well, also the nasturtiums and I've filled some tubs with winter pansies - which never make it as far as Winter. Both cats are spending more time indoors sleeping, a sure sign that Autumn is here.
Don't work too hard!
Gill X
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Hi Mary,
All sounding very positive on the surgery front. I was glad to hear that you have very little pain this time around and will be able to go through physio more quickly. Don't even consider replying to me, typing with the left hand is just another stress that you don't need.
The UK is in such a mess and Parliament - MPs are back today - is a madhouse. It would be very entertaining if it wasn't all so serious.
I'm off to watch the rain, lots of it this morning.
Take care of your new shoulder.
Love,
Gill x
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Hello Sylvia,
Sadly, kiwi berries have disappeared from these parts for now. Norwich doesn't seem to have the variety of fruit seen in some other parts of the country. Of course we don't have motorways in Norfolk, not sure whether this is to keep the rest of the UK out or to keep us in.
Regarding HRT, I'm not at all sure about the herb solution. People often seem to hear the word 'herb' and assume the product is safe. So many prescribed and over the counter medicines are herbal derivatives too. Like you, the menopause was a non-event, in fact I welcomed it. I do know women who've become very ill though and I can see why they opt for HRT. Also women who go through an early menopause, sometimes as a result of cancer treatment. HRT is prescribed far too often as a miracle solution and I get the impression that GPS would like to see all women taking it. I'm very glad that I didn't need to.
I have made an appointment to have a flu vaccination at Boots. Michael is having his at the surgery over a week earlier so I'll have some idea about side effects by the time mine is due.
I watched the Supreme Court ruling live yesterday and was relieved to see Boris Johnson and his dangerous friend, Dominic Cummings slapped down. The response from both Johnson and Rees-Mogg was disgraceful. I think it would be worth travelling to London just to see Parliament in action this afternoon. I wonder if Susie will go? What an absolute mess the country is in and the Labour Party isn't remotely ready for a General Election. Once we have a written constitution the Queen's role should be reduced, she really ought not to be involved in politics at all. Whatever happens next, I would rather a monarch than a President so I hope this isn't where the country is heading. Imagine having to go through a presidential election every few years.
It's raining here and quite cool. The lawns desperately need mowing but the grass is always soaking wet. We should have done it earlier. The slugs are having a field day.
Hope you're work at the complex will ease off a little soon.
Love,
Gill X
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Hello Everyone,
It's coming up to a year since I finished treatment and I think it's time for me to bow out of the forum.
I'd like to share a few thoughts before I go.
1) Steer clear of negativity. I'm not suggesting that 'positive thinking can cure your cancer' but millions of women are treated for breast cancer every year and go on to lead full and happy lives.
2) Say the word 'cancer' loud and often to deprive it of its power. I recently ticked off one of my best friends for using the words 'the Big C'. When I was diagnosed I would respond to the question 'How are you?' from even casual acquaintances with 'I have breast cancer'. If that makes people uncomfortable, then that's their problem.
3) Listen to what your doctors, surgeons and breast nurse are telling you. Don't be afraid to question them but remember that they have massive experience and expertise in this field, in a way that your friend's 'naturopath' doesn't. If they recommend a drug for you, they're not doing it for their own amusement.
So, to all who have completed treatment, stay well; to all still having treatment, get well soon.
Susie xx
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Hi Susie,
I shall miss your posts and most of all, your sense of humour.
You leave us with some excellent points, I absolutely agree, that substituting 'cancer' for 'the big C' or other euphemisms is to cop out from the reality of this horrible disease, often just to spare the feelings of others. Use the word and take away it's power. It's cancer.
Susie, I wish you a long and happy life, though it is with sadness that I say goodbye.
With much love,
Gill X
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Hello Gill,
Thank you for your latest post.
I agree with you about HRT but as we often say on the thread, we all have to do what is right for us. Like you, I do not know what to think about the herb. Again, we just have to make up our own minds.
I do hope all goes well with your flu vaccination. I do understand why you are going to Boots. I shall not be getting a flu vaccination given what happened to me in 2017 when I had a flu jab for the first time since I was diagnosed with breast cancer in 2005. It somehow reacted on my surgery arm and resulted in my having to get back into the hospital system to go to the lymphoedema clinic. Raymond will have a flu vaccination and will have it done in Tesco's on our next shopping visit in the privacy of a quiet room at the pharmacy. We do not like the clinics at our surgery.
I do agree with what you said about the behaviour in Parliament on Wednesday. I cannot believe what is happening. Everything has become undignified and unprofessional. I thought the Attorney General Geoffrey Cox was perhaps worse than Boris Johnson. He was playing to the gallery.
We urgently need a written constitution but goodness knows how long it will take to get one. I do not believe in a monarchy and I do not think it is fit for a modern age. We are all supposed to be equal. I do believe in a republic and an elected head of state. At least we can get rid of them. It would be good if we could start by getting rid of the House of Lords and getting rid of all titles. It would be good if we could have a devolved English parliament, since the other parts of the UK have these. We would then need a Federal government to bind it all together. For this we would need a lot fewer MPs. We have far too many and they have definitely spoilt the broth.
I am wondering what is going to happen now, but I think that Boris Johnson should be made to resign. He has not been elected by the people of this country.
It is quite a nice day here at the moment.
Like you, I am very sorry to see Susie depart from the group. Like you I shall miss her sense of humour and I do agree that we should emphasise the fact that most people are surviving breast cancer and we should have a positive attitude rather than a negative one.
That is all for now.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for your latest post and for letting us know that you are bowing out from the thread after marking a year since you finished treatment.
Thank you for sharing your thoughts. I do agree with you about steering clear of negativity and also about not being afraid of using the word cancer.
I do agree that we need to work with our medical team and listen to them carefully but not to be afraid of asking questions. We have to be active patients and not passive ones.
Like Gill, I shall miss your humour.
I wish you all the very best for the future. Keep well, keep happy and enjoy every day.
Many thanks for your contribution to the thread.
Love.
Sylvia xxxx
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Hello PK,
I've just re-read your post and you mention aching and feeling that you've aged ten years. My joints are at their worst when I first get up in the morning or after sitting in the car and trying to straighten up again when I get out. It's only 7 months since chemotherapy ended so maybe this will be temporary. I was given a zimmer frame when I came out of hospital as I couldn't walk much at all, just a slow shuffle. I'm amazed by how far I've come since then, so perhaps we should stay hopeful about all these side effects. They might just improve over time. Did you get peripheral neuropathy?
Keep on with your recovery, you're two years out already!
Gill x
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Hi all
Hope u are having a great weekend. Slowly recovering from my fall and remain very busy. No pain just clicking joints particularly around the rib area which frightens me a little then I keep remembering what radiotherapy can do to joints. The weather is warming quickly here and we still have no rain.
Trying to study for a pharmacology exam and have been snowed under with Rheumatic Heart Disease follow up which has just been made a notifiable disease in NSW. Very prevalent in Aboriginal populations and the treatment and follow up is intense.
Learning lots though and finding it fascinating. Also experiencing a late surge in flu B. Will post some URLs for the flu data on the site this week for anyone who is interested given that winter is fast approaching in the northern hemisphere. Still try very hard to get my head into gear but my mind often heads to that dark place. It’s always such a relief to talk to people on the site who understand. Stay well everyone
Much love
Kath
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Hi Kath,
Good to hear that you're recovering from your fall albeit slowly. I didn't know that radiotherapy could damage joints. I haven't needed radiotherapy, just a mastectomy followed by chemotherapy - still have aching knees and finger joints though.
I was interested to hear about Rheumatic Heart Disease in Aboriginal populations and the late flu surge. I'm having my vaccination this Thursday and hope that it works. We were advised last flu season that the vaccine was far less effective for the over sixties and I'm 64. Oh well, fingers crossed!
I absolutely know what you mean about that dark place. I don't visit often, but it still drags me in from time to time. I don't even try to explain these feelings to people who've never experienced breast cancer, I guess that's why this thread has been so important to me.
Wishing you the best of luck with your pharmacology exam.
Love,
Gill X
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Hola mañana, el último ciclo de gemcitabina y carboplatino ha terminado ... el lunes siguiente, la siguiente dosis y luego esperar 4 semanas para evaluar cómo estos mismos órganos internos con una mascota y una resonancia magnética del cerebro.
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Hello Marias,
It was wonderful to see your post on the thread.
First of all, I have put this post in Spanish into English for those who do not know Spanish, as I am sure some of the group who know you, such as Mary and Gill, will want to answer. I shall do my own post as well. Seeing you back on the thread is a good way for me to start the week.
Love
Sylvia xxxx
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Hello everyone,
Here is Marias' post in English.
Good morning to all and have a good week.
Love.
Sylvia xxxx
Hello tomorrow, the last cycle of gemcitabine and carboplatin has ended ... the following Monday, the next dose and then wait 4 weeks to evaluate how these same internal organs with a pet and an MRI of the brain.
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Hello Marias,
Thank you for popping in and letting us know how your treatment is going. I was so glad to know that you have completed your last cycle of gemcitabine and carboplatin. How are you feeling after all that?
I do hope you will be able to have a relaxing four weeks to get strong again while you are waiting for a PET scan and a brain MRI scan to see what is happening with the internal organs.
We are all thinking of you.
Abrazos
Sylvia xxxx
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Hola marias
Gracias por venir y hacernos saber cómo va su tratamiento. Me alegró mucho saber que ha completado su último ciclo de gemcitabina y carboplatino. ¿Cómo te sientes después de todo eso?
Espero que pueda tener unas relajantes cuatro semanas para recuperarse mientras espera una tomografía PET y una resonancia magnética cerebral para ver qué está sucediendo con los órganos internos.
Todos estamos pensando en ti.
Abrazos
Sylvia xxxx
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Hello Kath,
Thank you for your post.
I was glad to know that you are slowly recovering from your fall and that you are keeping busy.
You will probably feel better with warmer weather as you enjoy the Spring in Australia. Here we are quickly going into Autumn and are now having a lot of rain and a lot of cloud but it is still fairly warm.
I am very interested in what you are doing in your pharmacology exam and I am especially interested in what is going on with rheumatic heart disease, which has just been made a notifiable disease in NSW. I was interested to know that it is very prevalent in Aboriginal populations.
Rheumatic heart disease was very common in generations here before 1948 before antibiotics were introduced. My mother and Raymond's mother both had rheumatic heart disease as children and it left them with many problems with their hearts. My eldest brother died of rheumatic heart disease at age 10 (endocarditis) and my mother had it again at the same time.
I am also very interested in what goes on with your flu over there. The flu injections are beginning here and Raymond will book in for one this week. I shall not have one because of what happened in October 2017. I do not feel that I can risk it so I shall just keep my fingers crossed. I shall be glad to have any information that you can send.
Stay away from dark places and keep optimistic.
Love.
Sylvia xxxx
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Hello Marias,
It's so good to hear from you. Congratulations on completing your treatment, I do hope that it wasn't too difficult for you. I know that you had been very worried about the possible side effects. We will all be hoping that your pet scans are good and your brain MRI is clear. I'm glad that you're being given time to rest before these investigations are done.
My very best wishes.
With love,
Gill X
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Hello Sylvia,
Thank you for translating Marias' post. I'm glad that she found a way through her treatment, it can't have been easy the second time around.
I've been trying to improve my intake of magnesium, I eat wild salmon three times a week, but nuts, seeds and leafy vegetables all cause my colitis to flare up. I had half an avocado last week which had a similar effect. A small banana is fine. It's all trial and error at the moment and I miss my old diet which was healthy and very varied.
I see Boris Johnson is making wild promises about building new hospitals. Hospitals without doctors and nurses presumably. I haven't been following the Tory conference as Johnson and Co make me far too angry. Dominic Cummings is a very frightening man and he seems to be the one running the country these days. He is also a very wealthy man, apparently his house has a tapestry room amongst other things! I don't know where all this is going to end and I worry about the impact on our health service and our access to medicine. I hope that cancer medication and treatments will be safe.
It's warm and bright in South Norfolk today after a weekend of very heavy rain.
Hope you and Raymond are able to enjoy some good weather before the October winds get underway.
Love,
Gill X
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Hi. My mom came on a trip on August 18. She has like Raymond a heart disease. he has atrial fibrillation ... we don't know well but on the 19th he had a heart attack so he was hospitalized a few days later last week they put a watchman device in the ear of the left atrium. She was hospitalized for several days and I am emotionally very tired. At the beginning of September I moved out of an apartment since the previous one where I lived for 5 years was leased. The real estate company asked me to go to the Judge, because for me with everything that has happened to me to move and pay more expensive the lease is quite complicated. They ask for the apartments because they increase the value of the lease by 50 percent. I managed to give an initial fee and buy one in the same smaller sector. adapting to change. It has no elevator and is a fourth floor. We have not finished organizing the space or the paintings well, but with so many complications that we have had to decorate the apartment, it becomes the last. I am very confident that nobody is going to ask me to move ... because this is mine, obviously paying the fees to the bank.
Abrazos
Maria
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Hi. delivery 3. my treatment has been hard the nausea bothered me a lot and hemorrhoids too. It is getting easier and easier, I don't know if it is because my body adjusts or my mind accepts all this more peacefully. Mary, I trust your shoulder to get better soon and I feel so much pain .. Sylvie I trust the flu does not get to you because as you say the vaccine is more complex because of its side effects. A hug I go to the clinic.
Abrazos
Marias
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Hello Marias,
I was sorry to read that your mum had had a heart attack on August 19th, just the day after arriving in Colombia. It might have been due to the plane flight. Has she had heart disease for a long time? I do hope she is making good progress and that the pacemaker will enable her to live normally.
I can understand that you are feeling very tired emotionally. Try to have a quiet, relaxing time with your mum. How long will she be in Colombia?
I was so sorry to read that you have been having trouble with your apartment. You did not need this after all your health problems, and your mum's heart attack. In English we have a saying that "it never rains but it pours!".
I was glad to read that you have now been able to buy a smaller apartment in the same building and I do hope you will be happy and settled there.
It can often be a problem if you rent and apartment in an apartment complex. The owner can always decide that he wants it back or the company can decide that. Will you be able to manage on the fourth floor without a lift/elevator?
Take your time trying to sort out the apartment. Remember that your immune system will be weak.
As for my husband, Raymond, he has never had any heart disease and then suddenly an ECG shows atrial fibrillation, but all heart scans have been clear. He is just taking low dose aspirin and some beta blockers. These tablets make him feel tired.
It is so good to have you back on the thread and I was glad to see that you are catching up with the posts.
Thinking of you.
Abrazos.
Sylvia xxxx
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Hola marias
Lamentaba leer que tu madre había tenido un ataque al corazón el 19 de agosto, justo el día después de llegar a Colombia. Podría haber sido debido al vuelo del avión. ¿Ha tenido una enfermedad cardíaca durante mucho tiempo? Espero que esté progresando bien y que el marcapasos le permita vivir normalmente.
Puedo entender que te sientes muy cansada emocionalmente. Trate de pasar un momento tranquilo y relajante con su madre. ¿Cuánto tiempo estará en Colombia?
Sentí mucho leer que has tenido problemas con tu departamento. No necesitabas esto después de todos tus problemas de salud y el ataque al corazón de tu madre. En inglés tenemos un dicho que dice: "¡nunca llueve pero llueve!".
Me alegró leer que ahora ha podido comprar un apartamento más pequeño en el mismo edificio y espero que esté contenta y se establezca allí.
A menudo puede ser un problema si alquila y alquila un apartamento en un complejo de apartamentos. El propietario siempre puede decidir que quiere recuperarlo o la empresa puede decidir eso. ¿Podrá administrar en el cuarto piso sin ascensor?
Tómese su tiempo tratando de resolver el apartamento. Recuerde que su sistema inmunológico será débil.
En cuanto a mi esposo, Raymond, nunca ha tenido ninguna enfermedad cardíaca y, de repente, un ECG muestra fibrilación auricular, pero todos los escáneres cardíacos han sido claros. Él solo está tomando dosis bajas de aspirina y algunos betabloqueantes. Estas tabletas lo hacen sentir cansado.
Es muy bueno tenerte de nuevo en el hilo y me alegré de ver que te estás poniendo al día con las publicaciones.
Pensando en ti.
Abrazos
Sylvia xxxx
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Hola marias
Sentí mucho leer que tuvo problemas con náuseas y hemorroides durante su tratamiento. Estas drogas son tan tóxicas pero has sobrevivido a todo. Felicidades. Es sorprendente cómo podemos controlar las cosas a pesar de todo. Todos sabemos sobre la mente sobre la materia.
Recibimos algunas noticias sobre lo que está sucediendo en Colombia, así como en Venezuela y Brasil. Es muy triste que haya tantos problemas en América del Sur que es tan hermoso.
¿Sigues las noticias sobre el Reino Unido? ¡Está muy desunido!
Mantendré mis dedos cruzados sobre la gripe.
Enviando mucho amor.
Sylvia xxxx
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Hello Marias,
I was so sorry to read that you had problems with nausea and haemorrhoids during your treatment. These drugs are so toxic but you have survived it all. Congratulations. It is amazing how we are able to control things despite everything. We all know about mind over matter.
We do get some news about what is going on in Colombia, as well as Venezuela and Brazil. It is so sad that there are so many problems in South America which is so beautiful.
Do you follow the news about the UK? It is very much dis-United!
I shall keep my fingers crossed about the flu.
Sending you much love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. Once again, I read all that you had to say with great interest. I need to take a break but I shall try to get back to you later on today.
Have a good week.
Love.
Sylvia xxxx
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Hi Maria - how lovely to hear from you. I pray that the remaining treatments will go well for you and also your move to a new paartment - that can be quite stressful . I also hope that your Mom's health improves. Take care of yourself.
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Maryna - I hope your shoulder is improving - we all look forward to hearing from you.
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Hi, my new apartment has better views and the sun doesn't hit it so hard. Now in early September when we moved the heat was hellish. so I used the air conditioner and my brother bought an environment cooler that uses water to cool the environment is an Indian brand. Symphoni is the brand.
It was doing temperatures of 36 degrees and there were many fires in the mountains for being so dry. The mountains seen in the photo are the Andes mountain range in Colombia, it opens in three branches. The one seen in the photo is called the western mountain range.
The mountain with a peak is called "parrot beak". It has already started raining for a week so the temperature has improved to 24-19 degrees Celsius.
The photo of the hammock was from the other apartment. there is no room for the hammock or the plants.
Abrazos
Marias
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Hello delivery 2. Here I have installed a cable TV from a Mexican company, it's called Claro, it is from magnate Carlos Slim. And I have the BBC channel, dw, CNN international, so I watch news about the world. They show the desire to leave Europe from the English as if it were a whim of some. and show how England struggled to enter the European economic union. I have not thought much about it, and I really do not understand the implications that it can have on ordinary people.
Here in Colombia kill every day social leaders is a silent war on all those who began to have a voice after the peace agreements. the military have also returned to kill civilians and make them go through guerrillas ... the war has returned and some of the members of the FARC returned to the mountain. War usually occurs in very miserable territories but rich in natural resources such as gold, water, etc. There are many multinationals in those territories ... it's very sad but I don't think about that either.
Here I live in Cali and violence has increased, due to poverty and drug trafficking ... the sector where I live gives me a more microworld or less certain. and he applied all the time the 11 commandment "not to give papaya". that is to go with the glasses under the car, go with jewelry, show the cell phone in the street, go with the bag loose one has to walk with the bag grabbed. That high paranoia has become part of the culture.
The city is with many immigrants from Venezuela who have been looking for new opportunities seeking to reach Ecuador and Bolivia that have increased their economy lately.
Here our president speaks all day about Venezuela, and the national news shows news of Venezuela, so they are very distracted from public opinion. President Duque was at the UN showing false photos of the guerrilla union with the gobt of Maduro de Venezuela. Accept here in Colombia that they are false photos but he does not speak but instead puts one of his ministers to speak to the country. But to the world if they saw it, that false news remains echoing Trump's interests of starting a war with Venezuela having the bases in Colombia.
Abrazos.
Marias
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The pool
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