Calling all triple negative breast cancer patients in the UK
Comments
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Marias,
I am so glad to see that you are feeling well enough to write so much to us! You have been through so much, I think you will come out of it well however. You are a very strong woman.
I'm sorry you also have the lymphedema as a side effect, I'm glad the massage is working well for you. You have explained very well how this massage makes the lymph "re-learn" how to leave the body. Thank you for that.
Keep doing what you're doing, resting and taking care of yourself.
Talk to you soon, love,
Mary
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Hello Pam,
Thank you for your kind words about December 29th. I have been busy researching the Vivascope and I am disappointed that once again the UK seems to be behind other countries with this equipment. It is widely available in Germany and Germany is always mentioned as being at the forefront of cancer treatment. It seems to be available in Australia as well and from what Marias is saying it is available in Colombia. I think it is available in the US as well. I phoned up the mole clinic, dermatology today to ask about the Vivascope, but so far I have not got very far. I would like to find out if and where it is available in the UK. I do hate double standards and postcode lotteries when it come to health treatment.
I have not seen the Grinch cartoon, but Raymond seems to think it exists over here.
That is all for this evening. I look forward to hearing from you again.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia, Mary, Marias, adagio and all
Sylvia I send you my deep prayers for the best results to get. I'm very eager to hear your happy news about it. I also hope you manage to overcome all the problems you are facing right now in the best ways possible.
Mary, sorry to know about your pains and I hope you feel better soon. Again, thank you so much for the candles you light for me.
Maria's, my deep prayers are with you to full recovery from all these. I'm sure better days are awaiting you.
Thank you all for all your kind words and support. I'm sorry if I can not post here very often as the side effect of my first chemo left me really without any energy even to type! In fact, the side effects of the injections I should have every night to keep white blood cells high were paralyzing as I got sever bone pain and excruciating headaches which radiated to my teeth and ears.After seeing the side effects, my Mo orderd to stop them and tonight I feel a bit better but I have cold like symptoms that do not let me sleep well. The weather is so polluted here in Tehran that it's the third day the schools are closed and my daughter is home. This has made things more difficult to me as I should take care of my daughter not getting bothered by my fatigue and pains. My mom comes to my house everyday and seeing how she tries to hide her pain and suffering from me makes things more difficult to me. All the time, she is insisting on me eating something esp foods with meat and dairy which is really hard for me. I can hardly convince her that some foods are not good for us as, thank God, she has always eaten everything and has never been seriously sick. On the other hand, my students ' repeated pms as why I'm taking a term off is a concern for me as I really would not like them to understand about my problem. It's really hard to convince them I just want to rest and refresh as they have never seen me tired of my job.
This line is the last part of my energy. I hope to go into a deep sleep.
I hope better days come soon.
Love
Hanieh
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Hello Mary,
Thank you for doing that check on Google. It sounds as though the FDA is dragging its feet just like NICE. It is so frustrating to know that equipment exists and those who have the power to say yes or no say no. I think everything that is held back with health care is based on money. You can have it if you go private and pay, but you cannot have it if you are under the state system or insurance system, for which you have paid anyway.
I do hope the cortisone shot will work for you and that everything will settle down. It seems we all pay the price for our cancer treatment, whether it is from surgery, chemotherapy or radiotherapy. All we can say is that it kept us alive. Peripheral neuropathy is not much fun but what can we do? There are so many long term side effects from treatment, osteopenia, osteoporosis, lymphoedema, possible heart problems, and who knows what else? Losing our hair temporarily, as well as eyebrows and eyelashes, seem minor compared to these long term effects. This is why I am always mentioning to the newly diagnosed to get DEXA scans before and after treatment, to ask about peripheral neuropathy and find out what the experts can do to prevent this and of late emphasising getting every bit of information about lymphoedema. We need the minimal treatment to get through with the least damage to our body. I would be asking about having as few lymph nodes as possible removed. I have been wondering what has happened to the blue dye lymph node test. I thought this was supposed to be carried out before treatment started to show up what nodes were affected, if any.
I was interested to read about your family history. Have you been to Germany?
The NHS did work well for a long time, but we are over burdened by too large a population and the system has not expanded to keep up with it. There is too much abuse by patients and the medical system, not to mention the drug companies ripping off the NHS. I think the GPs are going to introduce a system whereby you cannot get drugs available over the counter on prescription. I discovered the other day that the NHS is being charged four times the cost of paracetamol that is available over the counter. Patients abuse the system by asking for all sorts of things on prescription that are cheaper to buy over the counter. Patients emphasis too much the word 'free'. Just because cash is not handed over at the point of treatment does not mean it is free. We all pay dearly in taxes for the NHS and for a few years now the government has cut back and has badly underfunded the NHS.
I think our NHS is in trouble because of greed, abuse and underfunding, not to mention too much bureaucracy. I think it must be drowning in paperwork.
That is all for this evening. I have had a very busy day and did not have time to sit down until this evening. I shall catch up gradually. There is a lot of information from Marias that I want to go through.
Hanieh is very quiet, so we have to hope she is just resting.
Love.
Sylvia xxxx
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Hello Marias,
Thank you for your many posts. I am going to look at them in more detail tomorrow. Your description of the manual lymph massage is exactly what I have been taught and what I have been doing.
I am not really convinced about the compression sleeve or other compression garments for the upper body or for the legs.
Thank you for all the links about lymph massage. I shall look at them tomorrow. I am not surprised that they come from countries such as Sweden and Denmark.
Make sure you keep your body well moisturised.
Make sure you keep well hydrated.
Make sure you keep doing gentle exercises. One important exercise is to raise your arms as high as you can, clench your fist while your arm is raised and then gently open and close your hand. Since you are fresh from treatment, go gently and do not overdo it.
I have been told that I must keep my arm moving in a gentle way and to use it as much as possible.
I shall write more later.
Abrazos.
Sylvia xxxx
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Hola Marías,
Gracias por tus muchas publicaciones. Voy a verlos con más detalle mañana. Su descripción del masaje linfático manual es exactamente lo que me enseñaron y lo que he estado haciendo.
Realmente no estoy convencido de la manga de compresión u otras prendas de compresión para la parte superior del cuerpo o para las piernas.
Gracias por todos los enlaces sobre el masaje linfático. Los miraré mañana. No me sorprende que provengan de países como Suecia y Dinamarca.
Asegúrate de mantener tu cuerpo bien humectado.
Asegúrate de mantenerte bien hidratado.
Asegúrate de seguir haciendo ejercicios suaves. Un ejercicio importante es levantar los brazos lo más alto que pueda, apretar el puño mientras levanta el brazo y luego abrir y cerrar suavemente la mano. Ya que está recién salido del tratamiento, vaya con cuidado y no exagere.
Me han dicho que debo mantener mi brazo en movimiento de una manera suave y usarlo tanto como sea posible.
Escribiré más después.
Abrazos.
Sylvia xxxx
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Hello Marias,
I hope you found my post to you and the translation into Spanish helpful.
I have looked at the links you sent and printed out one about exercises.
I shall look at you other posts today and answer them.
Abrazos
Sylvia xxxx
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Hello Marias again,
I am replying to another of your posts.
Thank you for your kind words and of course I am hoping that this dysplastic mole is not malignant. You must have been very brave to have had all those moles removed many years ago.
I am hoping that all will go well when the mole is removed, but I am worried about what may happen because of the lymphoedema. The mole is halfway between my right wrist and the elbow joint.
I shall let you know how everything goes.
I am very interested in the Vivascope and I think we should have it in all the hospitals here. It would save a lot of unnecessary biopsies. In the UK we always seem to be very behind with medical things.
I think we all agree that there is over use of pesticides and we cannot know exactly what they are doing to our bodies. It will not be anything good for us. We cannot really trust organic food. I also have doubts about genetically modified food.
I was very interested to know that on December 2nd you went to the nuclear medicine clinic. I do know about iodine therapy and how some patients with thyroid problems need it. I have read about taking a pill and how you have to be isolated for a few days because you are radioactive and can harm other people. Did you take the pill and did you spend time in isolation?
I have read that iodine deficiency is quite common in Western countries. We used to have iodised table salt to make sure we had iodine in our diet. For some reason this was stopped when there was and still is a lot of fuss about too much salt in the diet. You need to eat seafood to get iodine but a lot of that, I fear, is now contaminated. I buy kelp powder and sprinkle it over my vegetables when I have my main meal. Kelp powder contains iodine.
You must not blame yourself for having had breast cancer and thyroid cancer. These things happen. I was told I should not have had breast cancer and that I should not blame myself. We can do all the right things and end up with cancer. There are so many risk factors. Most of these we cannot control. We can control what we eat but cannot control what is being sprayed on our food. We cannot control our environment.
I was sorry to read that you have been feeling sad and that you have been crying. I think that having a good cry helps to release tension and stress. If you feel like crying, have a good cry.
When your thyroid was removed, did they remove all of it? Did they remove the affected nodes? I think they must have put your tiny parathyroid glands elsewhere in the body to keep the calcium and parathyroid hormone normal. Apparently they can be transferred elsewhere.
Do not worry about what you did in the past. We cannot change the past. Look forward to the future and eat healthily now, try to keep active, mentally and physically, and avoid stress.
I shall write more later. I am going to prepare some lunch.
Abrazos.
Sylvia xxxx
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Hi Sylvia
Just came here to tell you I think you have not seen my two last posts. I think we were posting simultaneously and that's why you didn't see them.
My prayers and positive energy goes with you to have good results without any problems.
Love
Hanieh
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Hola Marías de nuevo,
Estoy respondiendo a otra de tus publicaciones.
Gracias por sus amables palabras y, por supuesto, espero que este lunar displásico no sea maligno. Debes haber sido muy valiente al haber eliminado todos esos lunares hace muchos años.
Espero que todo salga bien cuando se elimine el lunar, pero estoy preocupado por lo que puede suceder a causa del linfedema. El lunar está a medio camino entre mi muñeca derecha y la articulación del codo.
Te dejaré saber cómo va todo.
Estoy muy interesado en el Vivascope y creo que deberíamos tenerlo en todos los hospitales aquí. Ahorraría muchas biopsias innecesarias. En el Reino Unido siempre parece que estamos muy retrasados con las cosas médicas.
Creo que todos estamos de acuerdo en que existe un uso excesivo de pesticidas y que no podemos saber exactamente qué están haciendo con nuestros cuerpos. No será nada bueno para nosotros. Realmente no podemos confiar en la comida orgánica. También tengo dudas sobre los alimentos genéticamente modificados.
Estaba muy interesado en saber que el 2 de diciembre fuiste a la clínica de medicina nuclear. Sí sé sobre la terapia de yodo y cómo algunos pacientes con problemas de tiroides lo necesitan. He leído sobre tomar una pastilla y cómo debe estar aislado durante unos días porque es radiactivo y puede dañar a otras personas. ¿Tomó la píldora y pasó el tiempo aislado?
He leído que la deficiencia de yodo es bastante común en los países occidentales. Solíamos tener sal de mesa yodada para asegurarnos de tener yodo en nuestra dieta. Por alguna razón esto se detuvo cuando había y todavía hay mucho alboroto sobre demasiada sal en la dieta. Necesita comer mariscos para obtener yodo, pero mucho de eso, me temo, ahora está contaminado. Compro polvo de kelp y lo espolvoreo sobre mis verduras cuando tengo mi comida principal. Polvo de kelp contiene yodo.
No debe culparse a sí mismo por haber tenido cáncer de mama y cáncer de tiroides. Estas cosas pasan. Me dijeron que no debería haber tenido cáncer de mama y que no debería culparme a mí mismo. Podemos hacer todo lo correcto y terminar con cáncer. Hay tantos factores de riesgo. La mayoría de estos no podemos controlar. Podemos controlar lo que comemos pero no podemos controlar lo que se está rociando en nuestra comida. No podemos controlar nuestro entorno
Lamenté leer que te has sentido triste y que has estado llorando. Creo que tener un buen llanto ayuda a liberar la tensión y el estrés. Si tienes ganas de llorar, llora bien.
Cuando le extrajeron la tiroides, ¿la eliminaron por completo? ¿Eliminaron los nodos afectados? Creo que deben haber puesto sus diminutas glándulas paratiroides en otra parte del cuerpo para mantener la normalidad de la hormona paratiroidea y el calcio. Aparentemente pueden ser transferidos a otro lugar.
No te preocupes por lo que hiciste en el pasado. Nosotros no podemos cambiar el pasado. Espere el futuro y coma saludablemente ahora, trate de mantenerse activo, mental y físicamente, y evite el estrés.
Escribiré más después. Voy a preparar un almuerzo.
Abrazos.
Sylvia xxxx
I have translated my post in English into Spanish for you, so that you can understand better and so that you can share your valuable information more easily with us by having the English and Spanish version of your post.
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Hello adagio,
It was nice to hear from you. I do remember how cold it was in Montreal. I do hope the dog bite on your youngest son's face will heal completely.
I am trying not to think too much about the lymphoedema and the mole. I am not happy that we do not have a Vivascope here at the hospital in Exeter and I shall be very annoyed if I have problems with infection from the removal of this mole.
Thank you for all your kind words.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I think the Vivascope is probably used in some places in the States. There have been US research studies. I was not surprised to discover that Vivascope is widely used in Germany. I think it is far ahead of the UK in cancer treatment.
I agree with everything you said about RoundUp and genetically modified foods. They should be banned. It seems that we are all slowly being poisoned.
All those things you mentioned must play a part in cancer, pesticides, fast food, genetically modified food, high fructose corn syrup etc. We should not forget medication, either, and the fact that the medical service seems to want to medicate everyone. Cancer and other chronic diseases can only get worse.
I think it is a good idea to keep posting our stories on our thread. I do remember reading yours and Hanieh's a long time ago. If you can find them, please post them here. The forum is so big and it is not that easy to use, especially for newcomers, so if we can gather them together here it is much better. I keep seeing new threads created on the triple negative forum that are completely unnecessary. I am not sure why. Do they not see the existing threads?
That is all for now. I am still trying to catch up with the posts.
Sending fond thoughts.
Love.
Sylvia xxxx
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Hello Hanieh,
Thank you for your kind words. I know how sincere they are.
I was sorry to read that you are having trouble with the Neupogen injections that you are having in order to keep the white blood cells normal. I know from other posts that these injections cause bone pain and headaches. It must have been awful to have pain in the teeth and ears. I did not realise tht you had to take them every night. When is your next chemotherapy appointment? I cannot remember whether you are having weekly doses or every three week doses. Patients say that weekly doses are easier to bear.
Reading on I was glad to know that your doctor stopped the injections. I was sorry to read that the pollution is so bad in Tehran that the schools have been closed.
I am sure that your daughter will understand that you are not well.
I am glad to know that your mother comes to help everyday. You all need to try to be strong for one another.
I can understand how difficult it is for all of you. Please remember that your mother is only trying to help. It is very difficult getting people to understand when you do not want to eat foods like dairy products and meat that they take for granted. Perhaps you could solve this problem by thinking up something that you would like to eat and asking your mother to make that for you. Vegetable soups might be a good idea. Eat plenty of fruit, especially blueberries if you have them. Medjoul dates are nice and filling and so are avocados. Tell your mother you need small meals and often. Remember to drink as much water as you can. You must keep well hydrated.
It is best not to say to her that certain foods are bad for you. Just say that you do not fancy them. Try some plain soy yoghurt with live culture if you can, as that will help to keep your gut in order.
Of course, Hanieh, it is up to you what you tell your students, but it might be less stressful to tell them what is really going on. They could give you good support and help. Breast cancer and all cancers are so common in our modern world that so many people will experience them and there is so much information around now that it is impossible to remain in the dark.
I am so concerned about the number of young women getting cancer.
We are all thinking of you here and will understand if you do not have the energy to type. Remember hydrate, rest and sleep, be strong and keep looking forward.
Love.
Sylvia xxxx
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Hello Hanieh,
I think I have now caught up with your posts. The thread got so busy that there was a lot to deal with.
I am sending you all my love and support.
Keep going.
Love.
Sylvia xxxx
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Hi, Hanieh
I understand you are feeling overwhelmed with everything going on. I am also surprised you would have had the injections to build white cells every day, I had them during chemo but only on the day after infusion. The only exception was when I was hospitalized with neutropenia, then I had them daily for a few days because my white blood cell was exceedingly low. Perhaps it depends on the dosage you were receiving. I'm sorry you are having such side effects from them.
I also think that perhaps you should consider confiding in your students and letting them know what is going on. Keeping everything to yourself is more of a stress on you at a time when you need less stress and more support. They would probably be happier too, to understand why their beloved teacher will be leaving for a while. You cannot worry about everyone else right now, right now it is your turn to be having the support of your family and friends. When your brother was going through his marriage troubles, I'm sure you were there to support him and his children. The people who love you will feel much better if they can feel as if they are helping you through this.
I ate yogurt during my treatment too, it was something cold that would just slide down my throat. I also was able to eat eggs, I ate a lot of them. Cold applesauce was good too, although now I have no desire to eat it.
I hope you are able to get refreshing sleep, and you will come to better days after you are through with all this.
As for my pains, it is another chapter in my saga of trying to fix problems and seemingly only making them worse with unexpected consequences. I think I am on a search for perfection, and I need to let well enough alone and accept my limitations. I am just having a hard time with that.
I did light another candle for you and Marias on Sunday, and then more candles for all of us here. I will light more tonight.
Rest well, Hanieh. Talk to you again soon,
Love,
Mary
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Hi, Sylvia
I agree with you that it is very frustrating to know that there are better diagnostic tests(Vivascope) available and they are not easily accessible to all. I heard of another one a couple of weeks ago. This is why it interested me: When I was diagnosed with TNBC, I told the Doc that did my biopsy about it. I told him I was struggling with the decision to have one breast removed or both. He said in his opinion I could just take the one breast off, because with TNBC, usually a recurrence does not happen in the other breast but would be more likely in lungs, brain or bones. I had not heard that from my MO, when I asked him about it he said it was true, but he offered no counsel on the matter. I did decide on removing only one breast since I thought it would be faster recovery and less chance of complications to only remove the breast with tumor.
Over the ensuing years I have asked my MO about being screened for lung cancer, she said there is no good screening test for lung cancer. I have had chest x-ray but by the time it would show up there, it's pretty late in the game, I think. It is not good to have frequent CT scans. I have now heard there is a new, much safer, and more sensitive diagnostic test being used to detect early lung cancers. It has been shown to pick up very small lung cancers. It is being used in New York but it is only being offered as a screening tool for long-term smokers and people with pulmonary diseases. Why would it not be offered to anyone at risk for lung cancer? People like us, with TNBC or other cancers, or people who work in places that cause them to breathe in toxins every day?
As to all the side effects that can occur from cancer treatment, it is a lucky person who gets through it with none of them. I have seen or known of many surivors with varying degrees of neuropathy, I know of a few who have lymphedema, I know one young (40s) woman who has had to have a defibrillator installed in her chest for heart problems. That is why we are pre-treatment tested for heart issues, I am assuming she had those tests. The side-effects are not made much of during pre-treatment, but I suppose the staff doesn't want to put too many preconceived ideas in our heads, that's all I can think of as explanation.
I have not been to Germany, but my sis-in-law and I are thinking of planning a trip that would take us there.
I do take a medication sometimes that used to be over-the-counter. Here they moved it to be a prescription drug because one of the ingredients in it is used by people who are manufacturing methamphetamine, an illegal and highly addictive drug. It used to cost about $4.50, now one has to get it at the pharmacy counter and it costs about $17.00. Apparently for no other reason than now someone has to hand it to you, after checking you out via ID.
I am sorry about the NHS, our Social Security/Medicare is in much the same place. There is more population now than when it was started, and there is abuse. We pay into it our whole working lives, and still do pay into it every month. A large population works only for cash, there is no deduction for SS/Medicare taken out of one's paycheck in that case. It is all a mess, I am used to hearing that they will be out of money within a few years, but this a hot-button issue at election time so we are trillions of dollars in debt because of many things, including trying to keep up with these failing systems. I feel badly for the young generation who is being taxed to pay for a system they may not ever get to use, if it does indeed go kaput (German meaning broken, ineffective). There are more of us aging baby-boomers than there are of the younger working people. I have no answers for how to fix anything, I just observe and pay taxes, surcharges and fees.
I am sorry Hanieh is now having a hard time, but Marias must be better since she has posted quite a bit.
I'll talk to you again soon, love
Mary
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Wishing you all an enjoyable Christmas Day and a very Happy, Healthy New Year.
With best wishes to posters and viewers.
Sylvia xxxx
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Hi Everyone !
I have pages and pages to catch up on I have not been on for weeks. I hope everyone is well and rested
Hanieh - I hope things are looking up after chemo, from what i understand the first few days / week are the toughest then you will pick yourself up again ! Did you end up doing the cool capping ? Again inshallah this will go well and you are going to beat this !
Sylvia - I just read your post from 2 weeks ago ! Im sorry I might have not been so clear when i explain things so sorry to concern you! All the herbal "treatments" that she has chosen to use have all been approved by her oncologist - would never want to compromise her orthodox treatment ! As for the herbs that Karin kindly recommended, you are right she did say they usually prefer it if the client is opting out of chemo as some of the herbs will be counteracted by the chemo, however she recommended capsules that can be taken during chemo that will help ease side effects of chemo and keep her immune system up and running. Once chemo is over she will start taking the other capsules thats reboot your immune system and cleanses your body from the toxins. - of course all approved by mumma's onco !
Mum was supposed to start chemo last week, however she decided to start after the new years, that did stress me out a little as i don't want her to wait too long...not ideal, but poor mumma bear is just feeling super anxious so is stalling. She's healed up well since her surgery 9 weeks ago. So its down to her to find the strength to go ahead with everything hopefully first/second week of Jan. I told her she has nothing to worry about, she has me and my brother who will do everything to make her journey go smoothly !
Will catch up reading your previous posts and reply soon !
Wishing everyone a wonderful day
Lots of love
Sarah Xx
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Hello Mary,
Thank you for your post. I think we shall always find that there are differences of opinion among oncologists and breast cancer consultants. I suppose that all we can do is listen to our options and then make up our own mind. That is quite difficult but I feel that is what we have to do. In my own case I was not really offered options. I had a large tumour and I was told I needed to have the six months of chemotherapy first in order to shrink the tumour to make surgery easier. I thought the chemotherapy would be good because it is systemic and so would be dealing with cancer cells lurking anywhere else. I think with each part of the journey, there are risks. I was very lucky with chemotherapy because I really never felt ill, went from one infusion to the next and only ever felt fatigued. I never had any problems with red or white blood cells. I had never been ill before and I think my body was able to cope. My oncologist did say she was going to have to poison my body in order to fight the cancer. That made it pretty clear to me.
As for surgery, I was offered only a mastectomy and it is what I would have chosen at the time. Of course, the problem of lymphoedema after a mastectomy was not explained to me before the event. Even if a patient has a lumpectomy there is still risk of lymphoedema in the chest, and I would rather have it in the arm. I would not have consented to a bilateral mastectomy. I think having one breast off is trauma enough.
If you have been told you have the faulty genes, BRCA1 and BRCA2, or any others, that is a different matter. It probably makes sense then to have a bilateral mastectomy. I have a friend whose mother, mother's sister and the mother's daughter, all died of breast cancer at 41. so that friend has had both breasts removed and the ovaries. It is an interesting case, because the friend has three brothers and she and two brothers all have the faulty gene, but the other brother has not got it. It is interesting that the brother who has not got it has a different blood group!
I would never have opted for reconstruction and have no regrets about that. Reconstruction makes everything more complicated and if done at the same time as your breast surgery, makes it all longer.
I have read that with surgery there is always a risk of spreading the cancer, but these are the risks that you take.
I think that today if I were facing all this, I would not delay and I would ask for the minimal treatment to get me to no evidence of disease. I think I would want to avoid removal of lymph nodes and avoid chemotherapy treatment if possible. I have several friends here who had hormonal breast cancer and were able to have just a lumpectomy and radiotherapy. They are all still in the clear after many years, but of course they were on hormonal medication for years. I was glad not to have had that.
I do not think we can say categorically that with TNBC cancer will not be found in the other breast. I would think we could also get another primary in the other breast, if not why are patients having mammograms after TNBC. There is so much information going around that all you can do is make up your own mind. Virtually anything can be proven or not proven.
I do agree with you that it is not good to have frequent CT scans.
I was interested in what you had to say about a new diagnostic test for lung cancer. I am absolutely against tests being given in some places but not others, or being given if you can pay but not given if you cannot. I can tell you that I am hopping mad about the Vivascope not being approved by NICE but being available if you pay.
I think we should be told of all the possible side effects to all parts of our cancer treatment. That is the only way we can give informed consent. It is not right to be told only when symptoms appear.
Like you I do not know what the future will be for our healthcare systems. I think there needs to be much more responsibility from both the doctors and the patients. I think with cancer and other chronic diseases the numbers affected will continue to rise. I was talking to one of my female cousins this week and she was telling me that she knew of several women of her daughter's ages (early 40s) who had died of lung cancer.
I am not convinced of the effectiveness of this compression sleeve for lymphoedema. That is just my own opinion.
That is about all for now.
Love.
Sylvia xxxx
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Hi, Adagio
You have been very busy as usual, I see. Sounds like you had a good family visit, sorry about your son's injury. I hope he heals very well. And you had a nice lunch after a baptism, and are looking forward to family visiting for Christmas. I will have a Christmas party with visiting family on Friday the 22nd, they all leave on the 24th and then I will have a day off and then Christmas celebrations the next 2 days with local friends and the in-law side of family. And yes, I will sing on the choir Sunday for an Advent Mass and then Monday for Christmas, I am worried about my voice holding out. We had a long practice last night and by the end of it my throat was scratchy and sore and voice was a bit croaky, I have honey and lemon and all that but have also heard apple cider vinegar is good. However, not sure I want to sip on vinegar for an hour or so! Do you have any other ideas? I get tired too, like you I think it's probably normal, I blame a lot of things on the weather, why not?
I look back on the time of my cancer diagnosis at the same time as my husband's condition was deterioriating and it was so surreal, I just couldn't believe this was all happening to us. "One day at a time" was the mantra that got us through it, but it was tough. When the chemo part of treatment was over, I was a mess, and it took a long while to start feeling better. When my husband died almost exactly a year after my diagnosis, it set me back again both physically and mentally, my GP told me he thought I had PTSD. He was probably right, my husband has been gone almost 3 years now and I am still hanging onto things I should probably clear out.
But for now it's time to head into the holiday season, and I myself am rather looking forward to January to recover from all the hustle-bustle!
I wish you and your family a very Merry Christmas and a very Happy 2018!!
Love, Mary
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Good Morning Everyone,
I realized that I had attended or hosted about 9 holiday events over the last 10 days, including one wedding shower for a co-worker, a student appreciation party, a White Elephant Christmas exchange, a banquet lunch, a campus mixer, etc. Most of them were a lot of fun, but I am absolutely beat. I'm an introvert by nature, and making small talk drains me. So I'm ready to enjoy some quiet time and recharge now.
For our work events, we generally have no budget and can't afford to spend much time, which means that they are homemade, crafty, potluck kinds of things. We spend our own money, and. we are forced to work in groups and be creative. I've learned that a little bunch of balloons goes a long way toward decorating a room.
I can't hope to catch up with everything right now, but I wanted to get back about a couple of things. First of all, Sylvia, would you consider simply renaming the thread, "Calling all Triple Negative Breast Cancer Patients?" That might keep some posters from starting new threads.
I'm sorry to hear that you don't see much improvement from your compression sleeve, but I know that you will continue to do the exercises, and I really hope that a gradual improvement will happen that way.
I am just about cooked-out, having spent last weekend and this week producing potluck items. But thank you for the link to Grape Tree. I think I can get a lot of inspiration there. I gave up baking long ago, because I tend to eat about half of what I make on the spot! I think the Christmas cake is beautiful, and I agree that it would be very sweet with the fruit alone. I know that dates are intensely sweet, like candy. By inspiration, I mean the ideas of substituting coconut oil and coconut palm sugar. I am 49 years old, and would you believe that I can't recall ever eating that type of Christmas cake? Maybe processed sweets took over by the time I was paying attention.
My work friend from Sheffield makes and brings sticky toffee pudding to our parties, and it's really good. I haven't been very good myself about avoiding sugar, but that is one thing that's worth having.
As to where I would like to live, that's a great question. My husband and I talk about moving to a less expensive part of CA, such as Northern CA, or Oregon. I'm sure I couldn't handle the cold, but I would love to spend some more time in Scotland. We used to dream of living in Mexico, but it's been so dangerous since we last traveled there that's it's not on the table. I also love Japan, though that's not very realistic.
Your friend who was visiting LA for six weeks got a taste of the worst with our horrible, devastating wildfires. The season should be well over for that, but the winds only stopped recently, and it only got properly cold this week.
The original, "How the Grinch Stole Christmas!," (1966), was a classic TV short. I watched it again this year, and I recommend it. It's only about 26 minutes long.
Mary, I think about you, with your husband having just died in Feb, 2015, and then the loss your long-time cat, while you went through treatment. I am convinced that breast cancer treatment alone is enough to cause PTSD, and your experience was so immense, and so relatively recent. It seems like the holidays would naturally trigger memories of that time. I know it happens to me. Like you, I also feel much better physically now, and the whole experience still seems surreal.
I loved your description of holiday traditions in the past, particularly the part about taking the time to enjoy each one, and then being still to pay attention to the meaning of each.
Hanieh, This is probably the last thing on your mind, but I have to tell you that you have the most glamorous, movie-star eyebrows! They are perfection. I was always trying to get mind to look like that.
I have more to say, but I have to go for now. I'll post again soon. In the meantime, I thought everyone might enjoy this:
Love and warm thoughts,
Pam
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Hello Sarah,
I have just been reading your post with great interest. I hope you manage to catch up with reading the posts, because there is a lot of information that we put on here.
I was glad to know that the herbal treatments that your mum is taking or will take have all been approved by her oncologist. That is good to know and it is also good to know that perhaps orthodox medicine is beginning to see that there is a use for complementary and alternative treatment during our cancer journey. I know that the different consultants and breast care nurses tend to work as a team and there is consultation about patients. It sounds as though you are very well organised for your mum.
Why do you think your mum is putting off starting chemotherapy? Do you think she just wants to get past Christmas and the festivities? I can understand that you are concerned about how much time has gone by since she had her surgery. Perhaps she does not feel sufficiently recovered. I finished my chemotherapy about April 28th, after six months of treatment and then had my surgery afterwards on about May 17th.
Let us hope she will feel ready early in January. Is she having weekly sessions of chemotherapy or every three weeks? Patients seem to find the weekly sessions easier to deal with.
I cannot say for sure, if patients can have their radiotherapy before their chemotherapy. I know a few people in my immediate surroundings who had surgery, radiotherapy and no chemotherapy, but all of these had breast cancer with hormonal positive receptors. They then, of course, went on to years of anti-hormonal medication.
Do you think your mum is thinking of not having chemotherapy and that the radiotherapy will be enough? She needs to know that chemotherapy is systemic and the drugs go throughout the body. Radiotherapy was described to me as something more local to mop up any stray cells that may have been missed.
I am sure that you and your brother will take good care of your mum.
Love.
Sylvia xxxx
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Hi Sylvia, Mary, Sarah, Lily and all
It's 3 am and even with a sleeping pill, I have not managed to sleep yet.
Tonight was a national celebration here in Iran called Yalta which we celebrate the longest night of the year and the beginning of the Winter. Finally, there was rain and after 5 days of extreme air pollution we were able to breathe.
On yalda, family and friends gather together to spend the longest night together. It's a reminder that even the longest darkness will reach the light of the day.
We all gathered together in my parents house. At first we could all manage to keep a happy face. Yet, after dinner when my brother remembered the fact that he was not with his family and beloved children anymore, went to another room and burst into tears. Of course nobody understood but me,as everyone was busy clearing up the table after dinner. I went with my brother and as I had been holding my tears for some time we both cried silently in the darkness of the room. My brother is really devastated. If only I could do something for him.
I really don't know what future holds for us, but I have always asked God if my life is not going to be long, don't let it finish in sadness, misery and sickness. I have always been happy and full of energy trying to be a source of inspiration. It's not fair if others want to feel sorry for me. That's the biggest reason I'm reluctant to let others know about my problems. Here is the first place I'm expressing my deepest emotions and sorrows.
I have always tried to be a relief to my old parents who have spent the best days of their lives raising us, but now, exactly the time I should be there for them, I'm just a burden on their weak shoulders.
My daughter used to repeat this sentence so much that I sometimes felt tired of this repetition. "Mom I can't believe you are my mom. You are the best mom in the world." But now I just feel ashamed of myself. I've done nothing wrong but my cells are destroying me and my loved ones. I should work really hard to convince myself that it could be beaten.
Sylvia, I have injections every 3 weeks. I hope you are fine and everything goes well for you. Because of my students request, I accepted to take classes 2 days a week. May be that helps with my spirits too.
Sara, my deep prayers are with you and your dear mom. She will be fine very soon.
Lily, you really made me smile in my tears. I hope to keep my eyebrows during chemo.
My hair is very short now. I'm supposed to lose it in two weeks. I realllllllllly miss it for months to come. I hope my wig and I get on good terms with each other.
Sorry if I upset you with my sad words.I hope to come here with better days.
Love
Hanieh
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Hello Pam,
Thank you for your latest post. You seem to have been going through a very busy time, so I hope you get some quiet time now.
I do hope you manage to catch up with the posts at some point as there is always something of interest. I do expect people will be switching off for Christmas so the thread will go quiet. Raymond and I do not bother much about Christmas, so I shall keep an eye on the thread.
I have thought about slightly changing the name of the thread, but I do not know if it can be edited. If I can I would just change it to "Calling All Triple Negative Breast Cancer Patients in the UK and Anywhere Else in the World."
I would want to keep the UK part because that is why I started the thread and the first posts were from the UK and since then it has been a mixture. Although we do not have many Brits at the moment, that could change. If you look back to the first pages, you will see it was all Brits. I think the first post was from someone in Scotland and there were quite a few posts from there. Reading from page 1 and going through a few pages at a time, makes very interesting reading. It is something that I think would be of use to all new and relatively new posters and viewers. I often wonder what has happened to all the people that have been through this thread. I do remember that one husband posting for his wife did start at page 1 and go through. That member was PeterandLiz and he always had something interesting to say. He is from England. East Anglia, I think. At the moment we do have two Londoners posting, one for a sister and the other, Sarah, for her mother. I am London born, and spent the first twenty years of my life there.
As for the lymphoedema, I shall just see how it goes. I think the most important thing is to keep using the arm and doing exercise.
I do agree that the cake from Grape Tree looks really great. I do not do any baking and have not done so for years, but that cake does not look too unhealthy.
I do know someone here who makes wonderful looking cakes. She showed me a small Christmas cake with icing and decorations on it. She has great talent. I am sure someone local will enjoy that cake but I just do not eat anything like that. Christmas cake is very traditional here, along with Christmas pudding and mince pies. They are all very rich in dried fruit.
I was interested in what you had to say about living somewhere else. I would not know which country to recommend. The one thing about Scotland is that it is a large country with a small population of about 5 million, so I think there is a better quality of life. However, the weather is no good for people who like the sun. England has about the same land mass as Scotland, but we are way overpopulated at about 65/70 million. It is destroying our quality of life. All the immigrants coming here seem to want to be in England.
That is about all for today.
Love.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post. I was sorry to read that you are having trouble sleeping. It is probably the steroids that are keeping you awake. You might like to try some chamomile tea. It is recommended for getting a relaxing restful night. I usually have a mug about an hour before I go to bed. The one I buy is Pukka Three Chamomile.
I was very interested in what you had to say about Yalta. Here in the UK December 21st is known as the Winter Solstice. It is the shortest day and the longest night. I do not think there is a celebration. The Winter Solstice dates back to pagan times. It has really been taken over by Christmas and the New Year. people often stay up to "see the New Year in" on December 31st. In Scotland they call this Hogmanay, January 1st. I think all countries probably have something special this time of year. I know in France on Christmas Eve (December 24th) they have Le Reveillon and they also have this on December 31st. These big meals late at night are not really healthy. I do wonder why we have eating at night when we should be in bed asleep in the dark getting our melatonin hormone!!!
I can understand your brother's sadness. Family break-ups are very difficult. I always find New Year's Eve (or Old Year's Night) quite difficult, especially when at midnight Auld Lang Syne is sung. It is a time to remember those who have died, but never forgotten. I think of my parents, two brothers, aunts, uncles, cousins and friends, who made our life so meaningful. Auld Lang Syne comes from a poem by the famous Scottish poet, Robert Burns, written in 1788.
Should Old Acquaintance be forgot,
and never thought upon;
The flames of Love extinguished,
and fully past and gone:
Is thy sweet Heart now grown so cold,
that loving Breast of thine;
That thou canst never once reflect
On old long syne.
CHORUS:
On old long syne my Jo,
On old long syne,
That thou canst never once reflect,
On old long syne.
I do hope, Hanieh, that you will look forward with hope and optimism to a long and happy life when you have got through this second cancer journey. You did it before and you must tell yourself you will do it again.
Are you having your two chemotherapy drugs together? As I have said before, patient here have said that they found having doses once a week easier to deal with than every three weeks. You might like to mention this to your oncologist.
I was interested to know that you are teaching twice a week. If it helps you to get through this journey, then it is good therapy.
That is all for now. Post as often as you like, if you find it helps. We are all here for you.
Love.
Sylvia xxxx
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Hi All
Been ages since my last post! Infact probably this time last year!
My wife is now over three years out - and touch wood, so far so good. And little one is now over 2.5 years old!
I hope all you have a lovely christmas. My thoughts and prayers and with all of you going through this right now. But there is light at the end of the tunnel.
Lots of love
Tom
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Hello Tom,
I was so glad to see your post. It is a real joy when some former posters pop in to see us.
It is great news to know that your wife is now over three years out and that all is going well with her. How time has flown and your baby is now a 2 ½ year old toddler. All this will be a great inspiration to our younger posters.
I do remember you so very clearly, along with Mumtobe, who also had a baby during treatment.
Many thanks for remembering us and for your kind words.
Have a really good Christmas and best wishes for the New Year.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to send very best wishes to all of you that have been looking and viewing. Best wishes to:-
Mary, US
adagio, BC Canada
Hanieh, Tehran, Iran
Marias, Colombia
Kathseward, Australia
Pam, California, US
53Nancy, Manitoba, Canada
Lou, Singapore
Kathy, London, UK
Sarah, London, UK
Valstim, US
Rhonda, US
4everStrong, Paris, France
I hope I have not missed anybody out.
Sending fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to wish you all happy holidays.
Best wishes.
Sylvia xxxx
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Merry Christmas to you Sylvia, and to everybody here!
Happy Holidays and Happy New Year!
If you are reading this and you are one of our dear friends who are not feeling too good right now, know that we are thinking of you too, and know that next year will be better!
Talk to you again soon, I am getting ready to go to the first of my Christmas celebrations, actually I did go to one that didn't even seem like Christmas because it was too early in December. I will have 3 more after tonight, I think.
Love, Mary
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