Calling all triple negative breast cancer patients in the UK
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Hello Marias,
I have just seen the photographs that you posted. Thank you very much for doing that. I recognised the plant as the one that I used to have. I can see from the photographs that you are making a great effort to look after yourself.
I was looking at your details again at the bottom of your post. I was doing this to refresh my memory about your cancer journey. I was wondering whether you could update the details. Have you had any further treatment for your invasive lobular breast cancer? Is the capecitabine (Xeloda) treating the breast cancer or the thyroid cancer?
I was also reading about thyroid cancer and my medical book states that it is rare and the cause is not really known except for exposure to radioactive fallout.
I also noticed that with your second bout of breast cancer you had some hormonal receptor and I seem to remember you were taking some anti-hormonal medication.
It would be useful if you could update and/or refresh your details.
I am very interested in what goes on in your country. Greed and inequality are two very big problems. Our politicians have all been doing virtual meetings and just staying at home. Parliament is not the same like this and the government cannot really be opposed. We have a Prime Minister who lacks seriousness and just likes gimmicks. In a crisis he disappears and is a very poor speaker. I think they all earn too much money compared to ordinary working people and they have very generous expenses and great pensions. I think it is ironic that our present government who believes in the private sector and has starved the state, works for the state and gets all the benefits! As for the House of Lords, it is an anachronism that needs to be abolished.
I was interested to know that your country is secular and think that is how all countries should be. The Catholicism of South America only came about because of the Spanish Empire and the destruction of the native people.
Your account of what happened in your city of Cali recently and the killing of five young children is truly horrible.
I do agree that there is little regard for human life and history seems to be a succession of wars.
Everything seems so depressing on this planet and with little hope for improvement, so I shall change the subject.
Are doing any reading at the moment? So many books are being published and some of them seem important but books are expensive to buy and it is finding the time to read.
I do hope you managed to have an enjoyable time on the holiday in Colombia. There is nothing quite like happy music to lift the spirits.
I do hope you manage to get another computer soon.
Thank you, once again, for a nice long detailed and meaningful post.
I do hope you get an appointment with the endocrine department so that you can check on what is happening with your thyroid. You have a right to be kept informed. Is your thyroid cancer a new cancer or is it a spread from the breast cancer?
Keep as well as you can. Take each day at a time and try to find something positive about each day. Today I am happy that we are having a lot of rain after too much heat and drought. I can see the grass in my apartment complex returning to a beautiful green. The rain will keep people from crowding on the beach and ignoring social distancing.
Abrazos.
Sylvia xxxx
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Hola marias
Acabo de ver las fotografías que publicaste. Muchas gracias por hacer eso. Reconocí la planta como la que solía tener. Puedo ver en las fotografías que estás haciendo un gran esfuerzo para cuidarte.
Estaba revisando tus datos nuevamente al final de tu publicación. Estaba haciendo esto para refrescar mi memoria sobre su viaje con el cáncer. Me preguntaba si podría actualizar los detalles. ¿Ha recibido algún tratamiento adicional para su cáncer de mama lobulillar invasivo? ¿La capecitabina (Xeloda) está tratando el cáncer de mama o el cáncer de tiroides?
También estaba leyendo sobre el cáncer de tiroides y mi libro médico dice que es raro y la causa no se conoce realmente, excepto por la exposición a la lluvia radiactiva.
También noté que con su segundo episodio de cáncer de mama tenía algún receptor hormonal y creo recordar que estaba tomando algún medicamento antihormonal.
Sería útil si pudiera actualizar y / o actualizar sus datos.
Estoy muy interesado en lo que sucede en su país. La codicia y la desigualdad son dos problemas muy grandes. Todos nuestros políticos han estado haciendo reuniones virtuales y simplemente se han quedado en casa. El parlamento no es lo mismo así y el gobierno realmente no se puede oponer. Tenemos un Primer Ministro que carece de seriedad y simplemente le gustan los trucos. En una crisis desaparece y habla muy mal. Creo que todos ganan demasiado dinero en comparación con la gente trabajadora común y tienen gastos muy generosos y pensiones excelentes. Creo que es irónico que nuestro gobierno actual, que cree en el sector privado y ha matado de hambre al estado, trabaje para el estado y obtenga todos los beneficios. En cuanto a la Cámara de los Lores, es un anacronismo que hay que abolir.
Me interesaba saber que su país es laico y creo que así deberían ser todos los países. El catolicismo de América del Sur solo se produjo debido al Imperio español y la destrucción de los pueblos nativos.
Su relato de lo que sucedió recientemente en su ciudad de Cali y el asesinato de cinco niños pequeños es realmente horrible.
Estoy de acuerdo en que hay poca consideración por la vida humana y la historia parece ser una sucesión de guerras.
Todo parece tan deprimente en este planeta y con pocas esperanzas de mejora, así que cambiaré de tema.
¿Estás leyendo en este momento? Se están publicando tantos libros y algunos de ellos parecen importantes, pero los libros son caros de comprar y es encontrar tiempo para leer.
Espero que hayas disfrutado de tus vacaciones en Colombia. No hay nada como la música alegre para levantar el ánimo.
Espero que consiga otra computadora pronto.
Gracias, una vez más, por una publicación larga, detallada y significativa.
Espero que consiga una cita con el departamento de endocrino para que pueda comprobar qué está sucediendo con su tiroides. Tiene derecho a que le mantengan informado. ¿Su cáncer de tiroides es un cáncer nuevo o se trata de una propagación del cáncer de mama?
Conserva lo mejor que puedas. Tome cada día a la vez y trate de encontrar algo positivo en cada día. Hoy me alegro de que llueva mucho después de tanto calor y sequía. Puedo ver el césped de mi complejo de apartamentos volviendo a un hermoso color verde. La lluvia evitará que la gente se amontone en la playa e ignore el distanciamiento social.
Abrazos.
Sylvia xxxx
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Dear Marias,
You offer a fascinating insight into what is happening in your country. Murder is never acceptable for any reason, but the brutal killing of children is truly repulsive to any sane person. The suffering of your people ought to have resulted in a world wide response and condemnation. That you are living with cancer with all this going on around you is painful to read.
Despite everything Marias, you continue on your journey with a grace and dignity I can only admire. You seem to be looking after yourself in the best way you can. Walking barefoot on dewy grass is something I enjoy too, though I have no pain in my feet. I find the cool grass calming when my thoughts about the world are not.
Sylvia is right, you should try to find something positive in each day. I go to my favourite music when I need a lift, it's so easy to find on the internet these days. I hope this horrible virus becomes less dangerous soon. Some scientists have noticed that there are signs that Covid is becoming easier to catch, but does less harm. You need to be able to have visitors, perhaps relatives to stay for a few hours, but that is far too much of a risk at present. I'll keep hoping.
Keep letting us know how you are. Live for the day, tomorrow can look after itself.
Dear Marias, you are in my thoughts and prayers.
Love,
Gill xxx
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Hello adagio,
I have finally found a moment to sit down once again to try to answer people.
It was good to have you back on the thread and addressing individuals in the group. The thread is really too quiet and so it is good when the group comes together. There are always plenty of views but the posts seem to lag behind.
I do agree with you that it is good to keep busy, but it is also very important to relax, have some quiet moments and do some quiet thinking. It is true that keeping busy stops us from thinking about all the negatives in our current world situation, but they do come back with a vengeance when we have the quiet moments! I find my brain gets very busy when I should be sleeping!
I do hope you will get good results from the ultrasound of your heart. Do you know what caused the heart murmur. Did you have it before your breast cancer treatment? I ask this because we all know that chemotherapy drugs can damage the heart.
I do hope you get to the bottom of why you are getting weird gurgling sounds in your lungs and yet the doctor said that your lungs are clear. I do hope you will get good news from the CT scan but it is good news that you have no pain and no shortness of breath. Did you have ECG tests before and after your cancer treatment? I did, and all was clear, but I do wonder whether these tests can be trusted, especially ones just done on the spot. Raymond had a 72 hour portable ECG test and was told that he had atrial fibrillation, which is an irregular heartbeat. Only one episode of this occurred during the 72 hours, so it was termed paroxsmatic.
It has been very hot and humid here and was unbearable but it is now cooler and we are having plenty of needed rain.
I do agree that we are all suffering from Covid fatigue and here in the UK it follows on from Brexit fatigue and now the two fatigues are mixed up! We seem to be going through the same measures as you but they can change from one day to the next. I do not think the government in England knows what it is doing and Scotland, Wales and Northern Ireland seem to do their own thing. We are mainly doing different versions of social distancing and mask wearing. Everything is somewhat confusing!
The schools here are supposed to be going back in September but I do wonder whether it will happen. Education is in chaos, so we do need to get back to normal.
I do hope you will manage to get away for a few days in mid-September. You should be able to find an isolated place in Canada! Like you, Raymond and I are not keen to eat out. We are still very strict with our food and prefer our own meals.
Are you doing any reading these days?
How is your husband doing.
I do hope you have an enjoyable Labour Day on September 7th. That really signals the end of summer. For us, it will be Sunday August 31st, Summer Bank Holiday.
You must be looking forward to your new grandson. I hope all goes well.
Sending love and best wishes.
Sylvia xxxx
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Hello Helenlouise,
I was glad to read that you are Covid negative. Let us hope it stays that way. The virus here seems to be up and down and all over the place. The current method of dealing with it is local lock-downs but I am not sure it is working. Younger people seem to be more affected now but they are not dying from it and are not seriously ill with it.
I do hope your treatment with trastuzumab(Herceptin) and pertuzumab(Perjeta) continues to go well on the every three weeks routine. It is good news that your last heart scan was fine, but you need to keep a careful watch on your heart as the treatment proceeds.
You are a very strong person with great willpower to be coping with all this treatment. Take care of yourself and remember to rest and relax when you can.
I do agree with you that the whole bc.org seems much quieter than it used to be, but there are so many forums and threads that it is not surprising. I regularly look at the Active Topics and am surprised that often there are only three pages of listings for these. I like to keep this thread on the active pages. I think that this kind of forum backed by a charity and with Moderators is much better than something like Facebook. Here we know that we are getting facts about breast cancer treatment, side effects, and tips for getting through the cancer treatment. The Moderators seem to keep a close watch on what is going on. As for our posts, we talk from personal experience and do not claim to be medical experts.
Keep in touch, look after yourself and keep looking forward.
Love.
Sylvia xxxx
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Hello Helenlouise,
So, you're Covid free, that's a relief. Probably just some sort of virus making itself felt, very annoying though, especially in a job that requires you to use your voice a lot. Very pleased that your heart scan was good too and your treatment is going according to plan.
I agree that the whole website has become much quieter, it isn't just this thread. I'd have thought that the pandemic might have resulted in more activity, now that so many of us want to know how cancer treatment is working across the world with so many hospitals closing wards and holding back on routine scans, mammograms and referrals in Covid hotspots
Stay well Helen and I hope you are back at work very soon.
Love,
Gill xxx
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Hi Adagio,
Hope you're enjoying preparing for your new grandson. There's so many lovely things available to buy for small people, especially babies, It's hard to know when to stop. We have a specialist teddy bear shop in Norwich and I bought both my grandson and granddaughter a 'forever' teddy bear that would survive a lifetime, albeit scarred and battered. Its so good to have something to look forward to and share some good news.
Good luck with your heart scan results and I do hope that your lungs stop gurgling and giving you cause for concern. Even if your doctor tells you they're clear, it must be annoying and I'd want to know more.
Enjoy your scrabble - some sort of normality in these strange times.
With love,
Gill xxx
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Hello Sylvia,
I'm very impressed by your stamina. Answering all of those (very welcome) posts so quickly is quite a feat. Marias will be very pleased that you always write once in English and again in Spanish, it makes life so much easier when things are not going well. I despair of countries like Colombia, what on earth is all this cruelty, violence, greed and love of money for? Life comes to an end for every single one of us, no exceptions and we leave this world with nothing. Child murder is the most heinous of all crimes, how can these people live with themselves? My heart goes out to Marias and her family.
I know what you mean about Exmouth feeling unreal since the end of lockdown. Even the village feels different, as though everyone is on edge, waiting for something. In many ways, I'd like to forget this year ever happened and just look forward to 2021, hoping for the best.
Boris has said he's giving ten billion pounds to the private healthcare sector to enable it to reduce the very long NHS waiting lists. I don't know where, when or to whom he made this announcement, as he appears to have gone missing again. I refuse to believe that he's on a camping trip in Scotland with his girlfriend and baby and suspect that he's gone further afield. I think we should be in no doubt that the NHS is up for sale, Cummings testing the reaction from the press and public and will no doubt be pleased at the lack of any real opposition to the idea. Where are the journalists? Even the Guardian isn't making much noise.
I ought to have heard about my appointment for my annual mammogram and consultation with the breast surgeon by now. The hospital had to be reminded last year and this year I expect I'll need to chase them up again. It makes a stressful situation so much worse. I do check for changes, particularly along the mastectomy scar and all seems to be normal.
I had another newsletter from Chris Woollams this morning, I'm going to have a quick look through it, but can't really spare the time to do much more this week.
I do hope that Mary is feeling less tired and that the puppy has quietened down a little - though it seems a bit early for that.
Enjoy the rest of your week.
Take care of each other,
Love,
Gill xxx
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Hello all,
Just a bit of an update on my echocardiogram (heart ultrasound) - the news is a bit alarming. My aortic valve is very narrowed and the blood is being regurgitated back into the heart chamber instead of going around my body. My doctor phoned me the very next day and has fast tracked me to see a cardiologist. My GP said I will most likely need an aortic valve replacement. I am terrified. I should have an appointment within a week if all goes according to how it is set up - but with covid - who knows. I have to go to emergency if I have any shortness of breath or chest pain. He said I can carry on with my normal activities. The doctor said that this is a structural issue - and that chemo and radiation generally affect the muscle of the heart. He does not think they are related at all.
I did have heart tests done during chemo and more recently an ecg in January - but an ECG does not show structural things like blood entering and leaving each chamber of the heart.
I feel fine and look healthy - but apparently my aortic valve is in trouble. I feel like a walking time bomb! I am trying to not stress too much since I know that does not help matters at all. One of my neighbours whom I just bumped into yesterday works at the cardiac catheter clinic at the hospital and she said all the surgeons are great and tried to reassure me. She said that I will have an angiogram done prior to the valve replacement. The angiogram checks the arteries - so if there is any damage there, then they can fix that at the same time.
I will keep you all updated. But since this is a cancer forum, I will be brief about the heart - maybe I can find a heart valve replacement forum similar to this for support.
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Hello Adagio,
I can easily understand your anxiety. Aortic valve replacement is major surgery and has a long recovery time. Sylvia will know much more about it than I do and I'm sure that she'll respond to your post as soon as she can. I think you will feel much calmer once you've had a full discussion with your cardiologist. He or she will be very used to dealing with terrified patients and will be able to explain precisely what will happen during your surgery. You must have a great many questions you'll need to go through. I do hope that you'll be given a date for your operation very soon.
There may well be valve replacement forums out there, but I'm sure that we will all want to do our bit in offering any support we can. Fingers crossed that you'll soon have your operation behind you and be on the road to recovery.
Love,
Gill xxx
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Adagio I trust they will program you quickly the operation of the valve of your heart, and this difficulty is left behind and well resolved .. For fear, breathe, breathe, breathe .. so I am calming myself, my pressure is rising, they sent me Losartan 50mg twice a day, I am taking it but when I breathe, in bed, it is incredible before I started taking the medicine my blood pressure improved a lot. I trust it can help you. Some doctors say that breathing and meditating have helped many heart patients recover faster. It's called alternate nostril breathing.
Abrazos
Marias
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Hello everybody
gill thank you very much for your beautiful words and support-
Today I have felt better a little more active, I am trying to do something positive every day at home, or in myself and to look at them as an achievement, something that I do have control over. I trust things in the UK to improve and do not allow the community to privatize health services, which afterwards it is quite necessary that they will be given to the neediest. Here in Colombia health is a privilege, thank God I am among those privileged but part of my family is not, so it is much more complex for them to access good diagnoses and more efficient care.
A few weeks ago, in my lack of work, since the university has not provided me with a laptop to do my work from home, since my personal laptop was damaged.
I have started to watch series on the internet - in Colombia, for example Netflix, it runs most of the programs about more violence, drug trafficking, etc. So I was looking for alternatives, I got a VPN provider that allows me to watch TV from other countries. I finished watching the whole series of "calling the midwife" on BBC ONE and I really liked it. I know that Silvie does not like much how the series has been lengthened, but I found it interesting about the integration of contraceptive pills, which in Colombia, 60 years later, the access of these pills to single young women or adolescents is very limited.
I also saw the entire Poldark series as far as it is published. Those cliffs fascinate me.
I also saw the story of a golfer from the last century in Scotland, Tom Morris- I really like the story, especially the social mobilization that he had thanks to sport, although his end and that of his family really tragic-
Abrazos
Marias
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Hi Sylvie, I trust you and Raymond are doing well.
I am taking advantage of the fact that they have fixed an old computer that I had at home, it is a clone, all the programs are pirated, it does not have a camera or microphone to be able to work with it by zoom for example. Its screen is large which allows me to read a little on it, although the resolution of the screen is not very good.
Because of those hopeless feelings of the past week, I have started doing a course on a website called Coursera, the "Positive Psychology" course. Their opinion is that one can change catastrophic thoughts into pleasant thoughts and emotions. through perseverance, repetition and self-control. I have liked what they teach so far. I learned that I am brave, I like beautiful things, and that I am creative.
hehehe
Abrazos
Marias
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hello sylvie
Lately I have not read books again I have been listening to them by audiobook
I "read" "the forgetfulness that we will be" by Hector Abad Faciolince. I send you the link of the presentation of the book in English.
https://www.hectorabad.com/oblivion-a-memoir/
I also read two series by a Spanish writer, Carlos Ruiz Safon, who recently died of cancer.
I liked the books, although sometimes they reminded me of Gabriel Garcia Marquez's "One Hundred Years of Solitude", due to the Mancondiano of his stories-
https://en.wikipedia.org/wiki/Carlos_Ruiz_Zaf%C3%B...
I read "the shadow of the wind" and the "labyrinth of the spirits"
These "readings" take me out of my daily life and the concerns of my illnesses.
Abrazos
Marias
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Hi sylvie
For many years I did not feel well, I got very tired and I felt like I was suffocating.
I had blood tests done with a hemogram, which showed that I had low white blood cells but nothing else. a leukopenia.
In 2016 I was studying a master's degree in "Public Policy" I was doing after my work as a clinical psychologist at the University. I live in front of the university, and at noon I would walk home to have lunch and I began to feel immense fatigue that did not allow me to return to work some days, and others forced me to go in the car to the university.
There was no explanation for my symptoms- I had been diagnosed with depression, asthma, menopausal symptoms, chronic fatigue, fibromyalgia, and I don't remember what else.
the thyroid exams were perfect, so they excluded any difficulties with it.
On November 1, a holiday, I dream of my father (he died in 2005 at 62 due to heart problems) who tells me you have breast cancer. The next day, first thing in the morning, I go to my family doctor who sends me a mammogram, which they haven't done since 2013.
On November 5, in the results of the mammogram, I see a large lump.
On November 9 I had a "trucut" biopsy that had to be in the surgery room.
On November 19 they tell me it is breast cancer, infiltrating ductal carcinoma, nottingham grade 8/9.
They did a histochemical study on that sample and showed that it was triple negative breast cancer. I was scheduled for chemotherapy which began on December 26, 2016.
That same year I had visited two different endocrinologists, they had felt my throat and did tests and told me everything is fine.
I had an ultrasound scheduled for a few months on December 21 ... One of the general practitioners of the university health service had felt something on my thyroid that the other doctors did not feel and told me that my symptoms were closely associated Thyroid cancer, so he sent me the ultrasound.
When I already have the ultrasound that shows nodules on both sides of the thyroid ... the oncologist surgeon says, we already know that there is something, but we must quickly start aggressive chemotherapy for triple negative, so everything related to that cancer of thyroid is postponed.
Start chemotherapy for breast cancer. FAC_T for 6 months.
I just finished in June 2017. They do a test called "MY RISK" everything comes out negative
In July 2017 I had a quadrantectomy. where they report that it is an infiltrating ductal cancer with an insitu ductal component. A compromised node that is not the sentinel. They remove 19 lymph nodes, of which only one comes out metastatic.
I do the histochemical study to this larger sample and salt
e "estrogen receptors 25% positive, progesterone receptors negative, Her2 negative and the K67 index at 40%.
continuous tomorrow
Abrazos
Marias
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Hi Mary,
Hope you are feeling a little less tired this week. These tick bites really do take some getting over, I really don't know why ticks (also horseflies, mosquitoes and slugs) were ever invented, I expect the Good Lord had his reasons, but I definitely have questions........
The UK limps on from crisis to crisis and I have no idea where Covid plans are going - if anywhere at all. This week we have the exam results crisis, next week, who knows? The Prime Minister is hiding away in a tent somewhere in Scotland, no one knows where. In the meantime, the rest of us are just ploughing on and making the best of it. I'm still trying to keep up with events in the States, I think I'm beginning to get the hang of the system now.
The Cathedral is a strange place. Sung Mass has just one cantor and although the music is as beautiful as ever, with no other singing allowed, it feels very strange and a bit lonely. Only 250 people are allowed into services that were packed out in pre-Covid times. I usually attend the virtual Mass, at least I can hear everything, which isn't always the case when I'm actually present in person.
Keep well Mary and absolutely do not consider replying until you're back to your old self.
Love,
Gill xxx
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Hello Marias,
I think most of us here could benefit from watching the video you sent for Adagio. Finding a place within ourselves where there is peace and calm is critical for our health and wellbeing. It seems to me that you consistently think of others despite having so much to cope with yourself. Your reading is interesting, I'm going to find some time to look more closely. I'm very glad that you find ways to access reading material and self-help courses, also very impressed that you knew how to mend your old computer. I wouldn't have known where to start!!!
Hope today is a good one for you.
Love,
Gill xxx
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Hello adagio,
I have just had a look at the computer and read your latest post, so I have decided to answer your post before the others. I was concerned to read your news about the result of your echocardiogram. I can understand your fear but you must hang on to the fact that you can get through this.
I was glad to read that you have been fast tracked to a cardiologist and I am sure that he will explain everything to you and what he will need to do. So much of all this is so familiar to me as I have just been through it all with Raymond and his blocked arteries that ended in coronary bypass surgery, after ECGs, echocardiogram (which I sat and watched), CT scan and so on. He was in hospital with a man who needed heart valve replacement. Try to be calm and as we always say take one day at a time. It is a structural issue but it can be overcome.
I was interested to read that your doctor has said that chemotherapy and radiation generally affect the muscles of the heart. I am not convinced about this and it is coming from a GP. I would like to know what the cardiologist says and what the oncologist thinks. We know that chemotherapy and I think radiotherapy as well affect the heart, but do we really know how it affects it? It could affect it in so many different ways, I think.
When you see the cardiologist you should ask him for detailed literature about the whole process of going through heart valve surgery. I obtained one and it had a full account from start to finish about bypass surgery and I am sure there must be one for valve surgery.
I remember very clearly that Raymond also had an angiogram while he was in the hospital to ascertain the state of the arteries to see whether they could fix a stent. I was very disappointed because they said they could not and that the only option was the bypass surgery. I felt disappointed that this was happening to Raymond because we had both looked after ourselves throughout our lives.
It is good that you feel fine and that you look healthy. I know through the years that you have been on the thread that you look after yourself and that is a great plus.
Please keep in close touch and we shall give you all the support we can throughout this. You are a friend who needs help and comfort and it does not matter that we are a breast cancer forum. I am sure we would all like to know whether any of this is connected to our cancer treatment. None of us is under any illusions about how toxic cancer treatment is, and the harm it does to our body.
Take care, adagio, and keep in touch. We all care about you in this group.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
I agree with you about countries like Colombia and, unfortunately, there are so many like it. Democracy is in very short supply on this planet and I do not know how it will ever end. Those in control can crush ordinary people like so many ants. Why is there so much greed and tyranny in this world? As you say, life comes to an end for all of us and you cannot take anything with you.
I agree with you that we all seem to be on edge waiting for something to happen. Will it ever?
I have obviously been having the same thoughts as you about Boris. Once again, he has gone missing when there is more and more chaos. I think that he keeps himself out of the way so that he can blame others for all that is going wrong. He should be saying that the buck stops with him. I cannot believe the absolute mess that is going on with GCSE, A Levels and BTec results! This will be followed on with the absolute mess at universities. What will be the next disaster?
I can understand your anxiety about your appointment for your annual mammogram and consultation. Will they ever understand the anxiety that they put patients through when they are not seen on time? I have been wondering what is going on in hospitals. Someone I know told me that in five hospital trusts in one part of London there are only nine patients with Covid. Last night I watched the local news about the West Country and again it was about how few Covid patients there are in hospital. This makes me wonder why we are not getting back to normal, especially with cancer patients where time is of the essence. I suppose they want to keep the hospitals clear for the 'second wave'!
I have not looked at the latest email from Chris Woollams. Sometimes it all gets too much.
I saw the headlines on The Times today about a breakthrough in breast cancer treatment. I have not read it in detail. Have you seen it?
I do hope that all will go well with adagio. I know we shall all be there for her.
I do wish we could hear from Mary. I do hope she is alright and will come back to us.
That is all for now.
Love to you and Michael.
Sylvia xxxx
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Hola Marias,
Many thanks for all your recent posts. Thank you for updating us and i shall reply when I have more time.
Abrazos
Sylvia xxxx
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Hello Marias,
I am reading the first post of several that you have just made.
This is my understanding of what you have written. For many years you did not feel well, you were tired and felt as if you were suffocating. Consequently you had a full blood test (hemogram) which showed that you had low white blood cells (leukopenia). It seems that you did not get any diagnosis for the symptoms that you had but you were diagnosed with all sorts of things that you probably did not have. I do hope that the doctors did not give you different medications for all the ailments they were quoting. I get very concerned about the way doctors prescribe medication that have all sorts of nasty side effects and then quite happily give you umpteen pills to counteract whatever side effect you have. It is a nasty merry-go-round. Raymond will not play this game and has stopped taking most of his pills.
I was not surprised to read that you were feeling tired and even incapacitated since you were working and also studying, at a high level. The body cannot cope with this kind of regime.
I am not a doctor but I do know people who have had underactive thyroid glands and it makes them feel exhausted. I have a friend who has an underactive thyroid (Hashimoto's disease) and she told me that sometimes she did not have the energy to get out of bed. It puzzles me that they did not find anything wrong when they did the thyroid test.
It must have been awful, with all this happening to you, that you were then diagnosed with IDC breast cancer with triple negative receptors. It is good that nearly four years on since your diagnosis, you have survived, even though you have problems.
It was good that one doctor did feel something on the thyroid and sent you for an ultrasound. It seemed he suspected thyroid cancer. What an awful situation for you to have been in. It seems the decision was to deal with the breast cancer first and then deal with the thyroid cancer. These decisions are difficult. When I was diagnosed with IDC breast cancer with triple negative receptors, it was also discovered that I had hyperparathyroidism, an over active parathyroid gland which would need surgery because it would be life threatening. It was decided the breast cancer had to be dealt with first and it would be chemotherapy. It was decided that they would deal with the parathyroid problem after I had finished all my breast cancer treatment and had time to recover.
You were having a really hard time. In July 2017 you had the other episode of breast cancer and went through treatment. This time it was again IDC but you had one receptor positive for oestrogen. Again, you got through all this so this is good.
When did you actually begin treatment for thyroid cancer, because it seems it was not very fast.
This seems like a good place to stop, as I have gone through line by line of your first post, so I shall post more later.
Marias, you are a very strong and courageous person and you are getting through all of this while living in a very difficult country. We are all here for you in this group.
Abrazos.
Sylvia xxxx
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Hola Marias
Estoy leyendo el primer post de varios que acaba de hacer.
Este es mi entendimiento de lo que ha escrito. Durante muchos años no te sentiste bien, estabas cansada y sentías como si te asfixiaras. En consecuencia, se le realizó un análisis de sangre completo (hemograma) que mostró que tenía un nivel bajo de glóbulos blancos (leucopenia). Parece que no recibió ningún diagnóstico de los síntomas que tenía, pero le diagnosticaron todo tipo de cosas que probablemente no tenía. Espero que los médicos no le hayan dado diferentes medicamentos para todas las dolencias que le estaban citando. Me preocupa mucho la forma en que los médicos prescriben medicamentos que tienen todo tipo de efectos secundarios desagradables y luego, felizmente, te dan incontables pastillas para contrarrestar cualquier efecto secundario que tengas. Es un tiovivo desagradable. Raymond no jugará este juego y ha dejado de tomar la mayoría de sus pastillas.
No me sorprendió leer que te sentías cansada e incluso incapacitada ya que estabas trabajando y también estudiando, a un alto nivel. El cuerpo no puede hacer frente a este tipo de régimen.
No soy médico, pero conozco personas que han tenido glándulas tiroideas hipoactivas y eso las hace sentir exhaustas. Tengo una amiga que tiene una tiroides hipoactiva (enfermedad de Hashimoto) y me dijo que a veces no tenía la energía para levantarse de la cama. Me desconcierta que no encontraron nada malo cuando hicieron la prueba de tiroides.
Debe haber sido horrible, con todo esto sucediéndole, que luego le diagnosticaran cáncer de mama IDC con receptores triples negativos. Es bueno que casi cuatro años después de su diagnóstico, haya sobrevivido, aunque tenga problemas.
Fue bueno que un médico sintiera algo en la tiroides y le enviara una ecografía. Parecía que sospechaba de cáncer de tiroides. Qué terrible situación para ti. Parece que la decisión fue tratar primero con el cáncer de mama y luego con el cáncer de tiroides. Estas decisiones son difíciles. Cuando me diagnosticaron cáncer de mama IDC con receptores triples negativos, también se descubrió que tenía hiperparatiroidismo, una glándula paratiroidea hiperactiva que necesitaría cirugía porque sería potencialmente mortal. Se decidió que el cáncer de mama debía tratarse primero y sería quimioterapia. Se decidió que se ocuparían del problema de las paratiroides después de que yo hubiera terminado todo el tratamiento del cáncer de mama y tuviera tiempo de recuperarme.
Lo estaba pasando muy mal. En julio de 2017, tuvo el otro episodio de cáncer de mama y se sometió a tratamiento. Esta vez fue nuevamente IDC pero tenías un receptor positivo para estrógeno. Una vez más, superaste todo esto, así que esto es bueno.
¿Cuándo comenzó realmente el tratamiento para el cáncer de tiroides, porque parece que no fue muy rápido?
Este parece un buen lugar para detenerse, ya que he revisado línea por línea su primera publicación, así que publicaré más más adelante.
Marías, eres una persona muy fuerte y valiente y estás pasando por todo esto mientras vives en un país muy difícil. Todos estamos aquí para ti en este grupo.
Abrazos.
Sylvia xxxx
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Hello Mary,
I am really wondering how you are getting on. I do hope you are not posting because you are unwell. If you are unwell please let us know. We shall support you whatever is going on. If you are just tired and in need of a long break, please let us know. You have been such a strong support to me over the years and I really do miss you.
I do hope all is well with your puppy and that he is giving you lots of joy and not too much trouble. Did you tell us his name?
Life is weird here and i think there is plenty of trouble brewing. I follow the news about the US and that is not very encouraging either. It seems to me that common sense and sanity has gone out of the window.
Take care and keep well.
Love.
Sylvia xxxx
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Hello Marias,
I am responding to some of your posts that you wrote prior to the very long one giving details of your breast cancer journeys and your thyroid cancer.
I was interested in what you said about the old computer that you are using. I think Raymond would have been interested in it. Raymond is the whizz-kid as far as computers are concerned and I know just the basics.
I was interested to read that you have started doing a course on a website called Courera (the Positive Psychology course). How are you getting on with their beliefs about being able to change catastrophic thoughts into pleasant ones? I think I would find that very difficult to do.
I certainly believe that you are brave and creative. What kind of beautiful things do you like? I like to live a very simple life and like my home to be very simple, but tasteful and uncluttered.
I was interested to know what you are reading and watching. Call the Midwife and Poldark were very popular here. Because of Covid-19 there are lots and lots of repeats on the television so you can watch a lot of English dramas. The are on the Drama channel if I remember correctly. Some of them are very old. One of them entitled The Bill I used to watch many many years ago. It is about the everyday life of police officers. The 'Old Bill' is the slang word for the police force. These days I tend to watch news items, current affairs, documentaries, history and geography and not much in the way of entertainment.
Thank you for titles of some books that you are reading. Many many years ago I did read the novels of Gabriel Garcia Marquez and I especially liked One hundred years of solitude. Is this writer still alive? I looked up in one of my reference books and saw that he was 92 if he is still alive.
More recently I read some books by Javier Marias, said to be one of the best contemporary Spanish writers. His novels are very involved and so are his long sentences. He is called by some the Spanish Marcel Proust.
Thank you for the references. I shall try to look them up when I have more time.
I shall look forward to the next post from you in which you said you will continue the story of your breast cancer and thyroid cancer.
Keep positive, keep safe and keep looking forward.
Abrazos.
Sylvia xxxx
I was doing some research on the internet and I came across THY.CA Thyroid Cancer Survivors Association Inc. I think you would be interested in this as they are translating the whole of it into Spanish. I read the first paragraphs and saw that they were putting everything into Spanish and English. I think you would find it interesting to read.
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Hola Marias
Estoy respondiendo a algunas de sus publicaciones que escribió antes de la muy larga que brinda detalles de sus viajes por el cáncer de mama y su cáncer de tiroides.
Me interesó lo que dijiste sobre la vieja computadora que estás usando. Creo que a Raymond le habría interesado. Raymond es el niño prodigio en lo que respecta a las computadoras y yo sé lo básico.
Me interesó leer que ha comenzado a hacer un curso en un sitio web llamado Courera (el curso de Psicología Positiva). ¿Cómo le va con sus creencias sobre la posibilidad de convertir pensamientos catastróficos en agradables? Creo que me resultaría muy difícil hacerlo.
Ciertamente creo que eres valiente y creativa. ¿Qué tipo de cosas bonitas te gustan? Me gusta vivir una vida muy simple y que mi hogar sea muy simple, pero de buen gusto y ordenado.
Me interesaba saber qué estás leyendo y viendo. Call the Midwife y Poldark fueron muy populares aquí. Debido a Covid-19, hay muchas, muchas repeticiones en la televisión, por lo que puedes ver muchos dramas en inglés. Están en el canal Drama si mal no recuerdo. Algunos de ellos son muy viejos. Uno de ellos titulado El proyecto de ley que solía ver hace muchos años. Se trata de la vida cotidiana de los agentes de policía. "Old Bill" es la palabra del argot para la fuerza policial. En estos días tiendo a ver noticias, actualidad, documentales, historia y geografía y no mucho entretenimiento.
Gracias por los títulos de algunos libros que está leyendo. Hace muchísimos años leí las novelas de Gabriel García Márquez y me gustaron especialmente Cien años de soledad. ¿Sigue vivo este escritor? Busqué en uno de mis libros de referencia y vi que tenía 92 años si aún está vivo.
Más recientemente leí algunos libros de Javier Marías, que se dice que es uno de los mejores escritores españoles contemporáneos. Sus novelas están muy envueltas y también sus largas frases. Algunos lo llaman el español Marcel Proust.
Gracias por las referencias. Intentaré buscarlos cuando tenga más tiempo.
Esperaré con interés la próxima publicación suya en la que dijo que continuará la historia de su cáncer de mama y de tiroides.
Mantén una actitud positiva, mantente a salvo y sigue mirando hacia adelante.
Abrazos.
Sylvia xxxx
Estaba investigando un poco en Internet y me encontré con THY.CA Thyroid Cancer Survivors Association Inc. Creo que le interesaría esto, ya que están traduciendo todo al español. Leí los primeros párrafos y vi que estaban poniendo todo en español e inglés. Creo que le resultará interesante leer.
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Hello Sylvia,
Weather here cooler and quite breezy, nowhere near enough rain though. I'm just pleased to have a break from the heat and humidity.
Yes, I did read about the radiotherapy breakthrough for treating breast cancer more quickly. Apparently, radiotherapy will be done from inside the body in just one session. This will cut waiting times considerably and reduce the stress on patients. It must be exhausting for women to travel to hospital every day, particularly when they often have to wait for well over an hour after their appointment time, sometimes much longer. Radiotherapy departments are very understaffed in many hospitals. I wasn't offered radiotherapy because I'd had a mastectomy, but recent research on metaplastic cancer indicates that the survival rate is significantly better in women who do have radiation. Given the opportunity, I would have had it.
Like you, I also miss Mary. I do think she'll call in from time to time. I'm also holding onto the thought that when Covid is no longer such a problem, Mary will take her Devon and Cornwall holiday as she planned. We can all meet up for a cream tea - something to look forward to.
I hope to go and look at some bikes next week. Something fairly small and easy to ride off road would be best. I haven't been on a bike for well over 40 years and it wasn't an overwhelming success, in fact Michael has never forgotten me flying gracefully over a hedge in Driffield whilst waving to a friend. I won't be going anywhere near any main roads.
Enjoy your weekend and keep looking forward to the holiday makers going home.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
With reference to the latest news about breast cancer treatment I was wondering just how this would be done in just one session at the same time as surgery and how lethal it would be. I had three weeks of radiotherapy with boosters after surgery, having had chemotherapy before both, and I remember the big room that it all took place in the size of the radiotherapy machine. Each session was very short, painless but rather intimidating. I was fortunate not to have any skin problems but many do. I must admit that I cannot visualise how this can be done but I think they were trying this out fifteen years ago.
When you are going through your cancer treatment, chemotherapy is the longest and most difficult of the three parts of the treatment. Patients have all kinds of side effects. Afterwards comes surgery with all the trauma that brings with it. After all that radiotherapy does not seem so traumatic but it is nevertheless lethal. It is true that you go in every day and you must not miss any of the five days each week, but the session is so short that you are in and out in no time. It is intimidating because the radiologist gets you settled on a special bed, makes sure that everything is in place so that the beam centres on the area to be radiated that has been mapped out before with little dots on your skin. The radiologist leaves the room, having darkened it I think, and then switches on the machine, which manoeuvres above you for a minute or two. I used to close my eyes and count the seconds.
I was surprised to read that you were not offered radiotherapy because you had had a mastectomy. It shows me that individual hospitals must make their own decisions. I was told from the outset that I would have six months of chemotherapy before surgery, then surgery, a mastectomy, and then three weeks of radiotherapy. I was told that radiotherapy was done to mop up any stray cells that may have escaped during surgery and chemotherapy.
If this new idea comes to fruition I would think there would still be long waiting times and understaffing of experts trained to do this.
All this also makes me wonder why these two big proton beam centres are being built in Manchester and London.
I do wonder what is wrong with Mary. I do wonder whether she is alright. It is so out of character for her not to be posting and I can only hope that she will get in touch. I am sure she would have wanted to respond to adagio and Marias with all their problems.
I do wish you luck with your bike purchase. The easy option would be an electric bike. People tell me they are marvellous.
That is about all for this evening.
Love.
Sylvia xxxx
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Hello Sylvia,
As time goes by I do worry more about not being offered radiotherapy, particularly as research into metaplastic moves on and indicates the clear benefits for women with this subtype. With hindsight, I would have chosen radiation over chemotherapy. Most metaplastic cancer is chemo resistant which it why it should be given after surgery, rather than before. I still read of metaplastic patients being given chemotherapy before mastectomy in the hope that it will shrink the tumour and so often it doesn't, in fact the tumour continues to grow rapidly. This also means that a mastectomy then has to be performed either when the patient is suffering the side effects of chemotherapy, or delayed. Metaplastic is an extremely aggressive subtype and surgery should be performed as soon as possible and yet too many breast surgeons seem oblivious of this simple fact.
Given that cancer affects so many people in the UK, there is a strong case for opening specialist cancer surgery centres around the country. The speed of surgery is key and yet the NHS still limps along trying to cram cancer patients into already overloading surgery waiting lists. Surgery is frequently cancelled as emergencies suddenly need priority theatre/surgeon/aftercare time. It's a hopeless situation and requires urgent change. From a Government perspective, think of the money that would be saved. Rapid access to surgery would mean less need for expensive chemotherapy or other treatments and much less chance of recurrence and the need to repeat the whole process.
I was interested to read your reminder about the new proton beam centres. It's all gone very quiet, is it still happening I wonder?
I'm going to look at electric bikes too, but I have now developed a Summer cold so bike shopping is on hold for now. Maybe having a simple cold, miserable though it is, will give my immune system a workout?
Take care,
With love,
Gill xxx
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Hello Sylvia,
As you know, my annual mammogram is due in September, but as yet I don't have an appointment. I thought this was probably the result of the Covid delays. This morning I telephoned the breast care office and discovered that in my case and in accordance with 'protocol pathways', my appointment is not sent automatically like anybody else's appointment. Instead, I need a referral from my GP because I started off as a private patient. I actually started off as an NHS patient who was so concerned by the length of the waiting list and the number of surgery cancellations, that I paid for my mastectomy and then went straight back into NHS care, as agreed. All my treatment, chemotherapy etc, has been via the NHS and last year's mammogram and breast surgeon examination was organised by the usual NHS route - no GP referral needed, it just happened automatically. Why the change? Is it even the truth or was I quite simply forgotten. I'm not blaming the frontline staff at all. The IT system and patient records is shambolic. How many cancer patients are lost in this way? This hospital was removed from special measures because it was needed as a coronavirus hub. Nothing has changed, very short of frontline staff and drowning in managers.
Rant over! It's pouring with much needed rain here. I hope some of it finds its way to Devon.
Love,
Gill xxx
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