Calling all triple negative breast cancer patients in the UK
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Hello Paula,
Thank you so very much for your interesting and obviously heartfelt post. I was so pleased to read that we survivors on the thread can be of comfort to you and try to help you overcome or at least ease your fear. We all understand the fear and anxiety that breast cancer patients experience with this disease that can always come back.
Many congratulations on passing your three years since diagnosis. I was glad to read that you are living your life fully. It is important to remain positive and take each day as it comes. I think we all have the possibility of recurrence and spread in the back of our minds and you will find that as the years go by it will stay more and more often in the back of your mind. Just do what you can to lead a healthy life, eat healthily, keep physically and mentally active, and avoid stress.
It makes me feel proud of the thread to know that we, in the group, can help you and somehow give you the strength to cope with anxiety.
I do hope you will have good news when you have your appointment with your oncologist for your six month check up. We can all understand how afraid and stressed we get as the appointment gets nearer and nearer. Most of the time we get good news and there is this wonderful feeling of relief. I am over fifteen years since diagnosis and most of the time I keep breast cancer in the background, but sometimes I do go to the what ifs.
I was a few months off 63 when I was diagnosed back in 2005 and I remember the shock and horror that I felt. I was in a kind of stunned heavy silence. I was very reluctant to have treatment and did not start it until November, having been diagnosed in June. I sought other advice and treatments, mainly homeopathic with a consultant who dealt with breast cancer patients and I did it through my orthodox breast cancer surgeon. I took oral Iscador for five years and other things all the time I was having the standard treatment of surgery, chemotherapy and radiotherapy. The tumour status of triple negative breast cancer was in th dark ages in the UK at the time, and I was merely told my breast cancer was not hormonal, the anti-hormonal drugs would be of no use and the prognosis was poor. I chose to ignore all the doom and gloom, went through the treatment, did my own thing when I felt that was what I wanted and here I am 15 years on! I have always told patients on the thread to be positive about being diagnosed with negative receptors. I was glad that I did not have to go through years and years of anti-hormonal medications with their side effects.
I was glad to read that you have a great husband and three amazing grown up children and four lovely grandchildren. It is so important to have love and support from your family and that is a great motivation to keep going.
I do not find anything selfish in your post. A diagnosis of breast cancer is a great shock in a person's life whatever the age. There have been all ages on the thread.
Continue to love your life with your husband and family and enjoy your daily walks with your two dogs.
Please continue to read the posts and you can always come on here when you feel like and just tell us what you have been doing on a particular day. Talking about things other than breast cancer is great therapy and we talk about all sorts of things. Of course, lately, the talk has been about Covid-19 and the effect that it has had on all our lives. In the UK it is all still very confusing, and just when we thought we might be coming out of it all, we seem to be going back into it. We get very confusing instructions from the government.
That is about all for today. Keep well, keep safe.
Love.
Sylvia xxxx
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Hello everyone, I hope you continue very well. I have been drowning .. so they sent me an oxygen compressor that helps me a lot. Very sore feet, legs and hands. sometimes I think the oncologist just waits for me to die soon. haha .. but I'm still here. When the pandemic subsides a little, I will change my oncology. appointments are on the phone and he attends me for 5 minutes ... it's incredible. The situation in Colombia is terrible with the Pandemic and Corruption. I don't know what is worse. finally they are going to take Uribe to court .. but I don't think anything will happen. one of my best friends has covid and her brothers and father too. her father passed away a week ago. she continues to be cared for at home, she says that she feels very helpless when she goes to the clinic ... because there are many many sick people ... yesterday it was because her leg hurt a lot and they told her that it was nothing and they returned her to her home ... and she continues with a lot of pain .. If so for people with administrative and professional positions .. what will happen to the 70 percent of our population that does not have a higher education and belongs to the lower classes of the country's social scale. I am very afraid to go outside so I have been here at home for a month locked up. I trust this dramatic situation fast pass for everyone ..
Abrazos
Marias
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hello!!
there is my grandparents' house in Bogotá they sent her upstairs after they arrived from Glasgow
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Hello Marias,
Thank you for your post. It was nice to have you back on the thread again.
I was sorry to read that you are having problems with your breathing. I was also sorry to read that you are having problems with sore feet, legs and hands. I do hope these problems will improve as time goes on.
I think we are all getting very tired of living with the coronavirus pandemic. It makes life difficult and very restricted. The virus seems to be getting worse instead of better. It is frightening to think of what is going to happen as autumn and winter arrive. The coronavirus will get mixed up with seasonal flu. I think we are just going to have to live with the coronavirus.
I was sorry to read about your friend who has coronavirus and I hope she will make a good recovery.
Here in the UK we are going to have massive unemployment and probably years of austerity before we recover from this pandemic. As you say, it is the poor people that suffer the most. I think the main problem is that the world is overpopulated and so many people are living in confined conditions and infections spread easily.
I do hope you will gradually get better and you will be able to get back to a more normal life.
The only solution to this pandemic would seem to be a vaccine but I do not think there will be one in the near future.
Thank you for your link. It was very interesting to watch it.
Take care and try to keep safe.
Abrazos.
Sylvia xxxx
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Hola marias
Gracias por tu publicación. Fue agradable tenerte nuevamente en el hilo.
Lamenté leer que tienes problemas con tu respiración. También lamenté leer que tienes problemas con dolor de pies, piernas y manos. Espero que estos problemas mejoren con el paso del tiempo.
Creo que todos nos estamos cansando de vivir con la pandemia de coronavirus. Hace la vida difícil y muy restringida. El virus parece estar empeorando en lugar de mejorar. Es aterrador pensar en lo que sucederá cuando llegue el otoño y el invierno. El coronavirus se mezclará con la gripe estacional. Creo que tendremos que vivir con el coronavirus.
Lamentaba leer sobre tu amiga que tiene coronavirus y espero que se recupere bien.
Aquí en el Reino Unido vamos a tener un desempleo masivo y probablemente años de austeridad antes de recuperarnos de esta pandemia. Como usted dice, son las personas pobres las que más sufren. Creo que el principal problema es que el mundo está superpoblado y muchas personas viven en condiciones confinadas y las infecciones se propagan fácilmente.
Espero que usted mejore gradualmente y pueda volver a una vida más normal.
La única solución a esta pandemia parece ser una vacuna, pero no creo que haya una en el futuro cercano.
Gracias por tu enlace. Fue muy interesante verlo.
Tenga cuidado y trate de mantenerse a salvo.
Abrazos
Sylvia xxxx
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Hi Marias,
It's so good to hear from you. I've been trying to keep up with the news from Colombia and my heart goes out to you and all those in your country who cannot live peaceful lives and access healthcare and other crucial services. Covid has made a bad situation so much worse for you, I admire your courage and humour under such difficult circumstances. Just keep on doing what you're doing.
Thinking of you and remembering you in my prayers 🌈🕯️
Much love,
Gill xxx
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Hello Sylvia,
As usual, too much to do and too little time. Why do people think that if you're retired you will have more time on your hands than you'll know what to do with? I've refused to get involved with the Cathedral inventory and Michael will no longer be leading it. However, no sooner do we breathe a sigh of relief than it is suggested that as the archivists, we really ought to be in charge of the artwork collection/restoration! Apparently, whenever leisure time appears on our timetable, someone feels that it is their duty to find something to fill it - just in case we might be getting bored!
It's almost two years since my diagnosis.Time has passed so quickly and the memories of diagnosis and chemotherapy have faded. I no longer give much thought to my mastectomy and the scars of surgery have also faded. However, the trauma of C Difficile and sepsis and the failure of Filgrastim are all too vivid. Being told by the registrar that I might have only 24 hours left was too shocking to absorb and I didn't phone Michael for three hours and then only because I was persuaded by the nurse. I wish that I'd been offered some kind of psychological therapy afterwards. Even one session would have helped. A friend in London was given access to an onco psychologist, but we don't appear to have one here. I mentioned it to my oncology registrar and he thought it was a good idea and something he'd very much like to offer patients. Insufficient funding I expect. There have been mentions of psychological help for those people who've been hospitalised by Covid. What about us cancer patients? I do have the impression that cancer patients are, for the most part, just left to get on with it and just be grateful to be alive. This feeling increases as the number of people diagnosed with cancer increases. What do you think?
I would have liked to have written more today, but I have to go out shortly.
Keep well Sylvia and don't read too much about Johnson's latest exploits - that's just too bad for anyone's mental health!
With much love,
Gill xxx
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Hi, Gill
I read your latest post this morning and said "Bingo"! I agree with everything you said. Life is so busy, every time I think I will have a day to do as I please, it becomes filled with something or the other. Many things that are small, but when one is alone they become much larger. Some things just pop up, a paper I didn't sign, a bill I forgot to send, a gift I didn't purchase. And suddenly the day becomes filled with those things and also things that need to be fixed, some immediately and some that can wait till later. And nowadays, the puppy adventures, always popping up, having to go outside to play and the other necessities of his life. He is having his first nap of the day now, such a good puppy when he is sleeping! I am grabbing this opportunity to send a post to you, dear Gill.
Also I agree with your take on life after cancer, I call it BC and AC, for before and after. Not to be confused with BC and AD. After we finish our last chemo treatment, we seem to be expected to bounce back to BC condition. In my case, I never returned to BC condition. I had a lot of physical pain AC, and a lot of mental anguish, partly because I didn't know why I was in so much pain. The neuropathy really set in about 6 months later, shortly after my husband died, which didn't help at all. I did seek out a counselor, but I was not interested in her cognitive behavioral therapy, whether that was right or wrong I don't know. It didn't seem to help. This counselor was not connected with the Cancer Center. There I was told that the chemo would be out of my body in 6 weeks and then I would be okay. They would see me at my next checkup in 6 months.
I did not have the C. difficile that you suffered through, that sounded horrible and I'm sure you suffer the repercussions still. I did not share your Filgrastim problems, but do have the neuropathy that doesn't seem to bother you much. I agree with your opinion that we were diagnosed, treated, and sent on our way, into the wilderness with what felt like no guidance from the medical people in whose company we had spent most of the last year.
I need to go too, must sign some papers and see how I will deliver them. And do a little cleaning while puppy is not underfoot.
Talk to you later, Gill
Love, Mary
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Hello Gill,
Thank you for your latest post. It looks as though we are all getting too busy and I think that somehow we have got to find some leisure time. I do remember, when I was going through treatment that I was told that I had to learn to say 'no'. It is quite difficult when you are very hard-working and dedicated and want to do a good job. Sometimes now I do feel that I want time to myself, but I seem to put everything and everyone before me and then I find there is no time for me. I feel as though you and Mary are just the same. We have to do better for ourselves. My day seems to be divided up into being a volunteer director here at the apartment complex, keeping the thread active, looking after the apartment here, keeping in touch with various people and often no time left. Raymond and I have taken it in turns to be a director for the most of the eighteen and a half years that we have lived here. We act as a team. Raymond takes a great interest in the thread as well. We have carried on with dedication even when we have both been through illness. It is true that people think you have plenty of time because you are 'retired'!
It is hard to believe that you are almost two years since your diagnosis. You certainly went through a very difficult time and I am not surprised that the trauma of C Difficile, sepsis and the failure of Filgrastim are all too vivid.
I do understand that some patients would probably benefit from some kind of psychological therapy but I cannot see it happening when the NHS is in such dire straits. At the RD&E they had FORCE, a cancer charity in a lovely house in the grounds where you could go for a cup of tea and talk to trained volunteers. It was very relaxing and you could have various therapies such as aromatherapy, Indian head massage or just talk to someone. Family members could have therapy too. After finishing treatment my breast cancer nurse asked me if I would like to join a 'Moving on Group'. I went for one session with Raymond, but it was not for us, although I could see how it could benefit some patients.
I had a lot of discussion sessions with the homoeopathic cancer consultant at the Royal Bristol Hospital to which I was referred, at my request by my breast cancer consultant surgeon at the RD&E. These two worked together. I felt that during the five years that I was with her she really got to know me. She helped with her own treatment at each stage of my orthodox cancer treatment. As I have said before, I took oral Iscador for five years with her. I think we each have to find our own personal way of getting through the cancer journey.
From what I have been learning about Covid-19 patients from various articles and television documentaries they are going to need years of post-treatment, in particular those that have been very ill and near death. Apparently your body is very damaged when you have been very ill with it.
I do think that, at the moment, cancer patients are left to get on as best they can. Remember the article from the Moderators about having survivorship care. If this comes to fruition, apart from the physical side with scans etc., they may need to add strong psychological support. After all, cancer is a life time thing and we know we are not cured. It is not a word I ever use about myself.
I do understand that we sometimes want to say more on the thread than we have time in any single day.
I do agree that Boris Johnson is bad for one's mental health.
Raymond and I walked into to town today because he had an appointment at the dentist's. It was the usual procedure under Covid-19. I was allowed to sit in the empty waiting room to wait for him provided I wore a mask. The receptionist, also in her mask etc., and behind her screen, and I managed to have a pleasant conversation about the coronavirus and how surreal it all seems. Afterwards Raymond and I had a walk through Exmouth, but found having to keep putting on masks to go into any shop was rather tiring. I find the masks very hot and uncomfortable, but we just have to get used to it. I bought this week;s edition of the New European in Smith's. I always find it very interesting.
It is so good to see our friend Mary back on the thread. I am sure she will be glad to see that Marias has posted and we must not forget Paula (pkville) who said such kind words about how much the thread had helped her.
I do hope that Kath from Australia will give us more news about what is going on with her work and that we shall hear from Helenlouise with all the news about what is going on in Australia. The coronavirus seems to be getting worse. We should hear from Jags56 as well as things are dire in India.
I am also wondering what is going on in Canada with all these flare ups.
That is about all for today. Raymond and I walked back from town and he did fine. It did get a bit too hot. The temperature is so unpredictable.
I was glad to be able to have a look round the small natural food store that I like to go to. The owners know us well and are delivering to us once a week, but it was nice to be in the store. I bought some mistletoe tea (brand Floradix) which I used to drink regularly but have not had it for some time. Have you tried it?
Keep well, keep safe and try to find some leisure time. Best wishes to Michael.
Love.
Sylvia xxxx
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Hello Mary,
It is so good to see you back on the thread. I shall answer your post tomorrow. Please do not overdo things.
I was wondering what your puppy's name is.
Do you remember the name of the man from Northern Ireland that used to post for such a long time here? I just cannot remember it. It may have been Michael. He had non-Hodgkins lymphoma and his wife had died of triple negative breast cancer and he had dedicated a website to her.
I also wonder what happened to Sara (Lightandlife) who was posting for her mum and she used my homoeopathic consultant.
All for now.
Love.
Sylvia xxxx
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Hello Mary,
I read your interesting post to Gill and I agree with what you said about always having something to do. I find I keep making lists. Often I write out a list before I go to bed but then find I am always adding things the next morning. At least I have Raymond to help but I do not want him overdoing things as he still has to be careful with his chest and leg. It will be six months on August 14th sine he had his surgery. Gill has Michael to help as well, so I do understand that you are alone to do all this. It is true that there is always something to fix in the home. There is always paperwork to do and it is so easy for something to slip your mind. I am glad you have your puppy to keep you company. Do you have a name for him now?
It is definitely true that there is before and after cancer and one never knows what the after cancer will be. I think, for me, the most lasting AC is the neuropathy in my feet and nothing seems to get rid of it. The lymphoedema in my right arm is quite mild and does not bother me as much. Of course, we do not know what is really going on inside our bodies. All we can say that we have been the lucky ones who have survived. Gill had a really nasty time with the C. difficle and the sepsis etc.
Life here still seems surreal with the coronavirus and we now seem to be going backwards. I am convinced that this is something we are going to have to live with. I did watch a very interesting programme about Covid-19 in the US. It told the story from the beginning to now. It was nearly two hours long and was a serious programme. It was on PBS at 8:10 pm until 10 pm our time on Friday August 7th. It was made by WGBH.
We are having a heatwave here in the UK and it is very hot and humid. I find it makes me feel very tired.
That is about all for now. Thinking of you and sending best wishes and love.
Sylvia xxxx
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Hello Sylvia,
Regarding our lack of leisure time, my view is that people see that we take on a lot, so feel that we're reliable, 'if you want something done, ask a busy person'. I'm just learning to say no, but mentioned to someone at the Cathedral that Michael and me had decided not to participate in the inventory. It did produce surprised faces and we both feel slightly guilty, but have decided not to move on this one. Michael has the Parish to look after and that seems to take up more and more of his time, particularly now that people have had things stolen from outside their homes and the unscrupulous 'county lines' criminals have begun targeting our community. People need to call the police, not call us! Nonetheless, we have spent time looking out for suspicious activity, taken down the car numbers of 2 likely drug dealers and informed the police We're certainly not going to confront them in person. Michael reminded someone in the village only yesterday that he is no longer a 'Spring chicken' and that I was still suffering the after effects of chemotherapy and no I was not cured. He and another parish Councillor in his seventies were filling in the many rabbit holes and mole mountains on the village green at the time. It took them four hours and Michael need to lie down for an hour afterwards. Rant over!
I'm glad that you and Raymond are walking into town, despite the heat and Raymond's swollen foot. It's not just about the exercise is it? Seeing others out and about is so important for our mental health. Masks are a bit of a nuisance, but it looks as though they're here to stay. I've bought some colourful patterns, but don't think I'll be going for the fashion coordinated look quite yet. Looking on the bright side, masks do hide some of the lines and wrinkles and lipstick is a thing of the past for me at the moment.
It's hard to believe that you've been keeping the thread going since 2009. I think posts from people like Paula (pkville) give us some idea of just how important the thread is to people, so many visit for information, even if they don't post very often or sometimes not at all. Everyone here feels like an old friend, we have glimpses into their lives immediately after diagnosis, during treatment and, very importantly, in the years following. I hope people realise than anyone from anywhere in the world is welcome. It's so important to understand what is being offered to triple negative patients in other countries. Aftercare in the States, for example, seems to far exceed ours in the UK. Psychological therapy doesn't appear to be offered though and Mary says that she was just left to get on with it as we are in England. Many patients mention being declared NED or NEAD, following treatment. I wasn't and my friend with triple negative wasn't either. Perhaps this no longer happens in the UK?
The Big C centre at Norwich Hospital offers group sessions for women who have breast cancer, I haven't been to one. Like you, I don't feel that people talking about their experiences of cancer would help me. I had to fight for everything I had and I think hearing about how younger women with more common cancers were treated compared with my treatment wouldn't be helpful. Ageism is very much part of the modern NHS, as Covid and the care homes scandal has highlighted.
That's all for now. I have to help Michael with his planning committee zoom presentation for this Thursday, so I'd better get down to it.
Please give my very best wishes to Raymond and look after each other.
Much love,
Gill xxx
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Hi Mary,
Very good to hear from you. I'll get back to you soon. In the meantime, enjoy the freedom of your new friend's afternoon nap to enjoy some 'me time'.
Love,
Gill xxx
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Hello Gill,
Thank you for your last post. I found it most interesting. It is so awful that you have these County Lines criminals in your area and you are wise not to get involved with any of that. I do understand about people calling on you for all sorts of things. It is the same with Raymond and me and it has been like it for most of the eighteen plus years that we have been here. It has been like that in most of the places where we have lived! We always say that the favourite refrain in this country is "They should do something about it"!
We do find it strange in town in Exmouth. There is something unreal about the town and it is not relaxing. We were very glad to walk back home. Since then it has been mostly too hot and there are too many holidaymakers here.
I started this thread on September 12th 2010 but I actually started looking on the forum, quite by accident, as I was trying to find research about over-active parathyroid glands (hyperparathyroidism). It was diagnosed in me as my oncologist tried to explain high calcium levels in my blood. This is a sign of metastases and yet scans had ruled this out so she tested for hyperparathyroidism and after various tests this was diagnosed. My breast cancer consultant surgeon, who was also in charge of the endocrine clinic took charge of me, told me that hyperparathyroidism could be life-threatening and that I would need surgery to remove whichever of the four tiny glands was malfunctioning and taking calcium from the bones into the blood. I had to recover from the breast cancer journey and then in 2009 I had surgery to remove the lower right parathyroid gland which was on the same side as the breast cancer. I met up on the forum with Sam52 who had the same problem and we did a lot of research about the connection between parathyroid disease and breast cancer. Sam52 had been diagnosed with IDC breast cancer with hormonal positive status in 2001. We both went through our surgery at the same time, she in Oxford and me in the RD&E. The offending adenoma having been removed, the calcium in the blood immediately reverts to normal. The adenomas are usually non-malignant and so was mine. Along with the breast cancer treatment I developed osteoporosis but it has not bothered me. Sam52 started a thread on the forum entitled IDC breast cancer and hyperparathyroidism. I posted on there but it does not seem to be active now. I do not know what has happened to Sam52. There is also a thread about high calcium but that seems not to be active now, which is a pity. I was told that hyperparathyroidism is very rare, but I think it is just under-diagnosed. It does not figure in blood tests, which is ironic considering it is life-threatening! My breast cancer consultant surgeon told me that it had preceded my breast cancer, judging by the size of the adenoma and yet I had not had any symptoms. I would say that anyone with breast cancer who is told they have high blood calcium levels should get it checked out. The symptoms are remembered as 'moans, groans and bones'! I am sure people on the forum would find these two threads very interesting as well as the website www.parathyroid.com
I do agree that ageism is very much a part of the modern NHS.
Do you ever watch GPs behind closed doors. I watch it from time to time. It is quite interesting, but it is mostly into repeats now. They need to start some new series in different surgeries.
That is about all for now. Keep cool, keep safe, look after each other and keep away from danger. Raymond sends his very best wishes to you and Michael.
Love.
Sylvia xxxx
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Hello everyone,
I have just checked and seen that the threads about calcium, parathyroid etc. are still active. They are as follows:
Not diagnosed with recurrence or metastasis but concerned and the thread within is High calcium.
The other forum is IDC (Invasive Ductal Carcinoma) and the thread is Parathyroid disease and breast cancer.
It is worth having a look.
Sending best wishes
Sylvia
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Hi Mary,
I wonder if your puppy is beginning to understand the rules yet? Once he does, I'm sure that you're going to have lots of good times together. Training the little blighters is gruelling, but at least possible. I must have two of the most wayward, selfish, bad tempered cats that ever walked the earth, but training, of course, does not apply to cats.
I'm very fortunate to have avoided neuropathy. A doctor friend described it to me as a tingling in the fingers or toes. He really ought to have known better since he worked with cancer patients. Many of us have to live with a wide range of deficits after chemotherapy and still our doctors remain silent or play them down. They also exaggerate the benefits of chemotherapy. I was staggered to realise that it's only 4% - 5%. I salute anyone who goes through cancer treatment and all the SEs at the same time as nursing a terminally ill husband as you did. I have nothing to complain about compared with your experience.
I'm trying to follow American politics as you all gear up for the election. It's more complicated than ours, but we're only a small island - though we do have an awful lot of people in Parliament. I expect Covid will influence the result in America, as it would here if the next election was on the horizon.
Keep well Mary and take as much rest as you need while you recover from that horrible tick bite.
Love,
Gill xxx
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Hello Sylvia,
I think you're absolutely right to raise the issue of hyperparathyroidism. I've read what you have written regarding this condition before on the thread, but it really should be repeated from time to time - it's just too important to miss.
There's a piece in the Guardian today about the fall in cancer referrals since coronavirus. This would explain why my chemotherapy nurse was able to tell me that cancer surgery and chemotherapy was going ahead as normal, with everyone having treatment on time. Well this would be the case if people with the symptoms of cancer were not being referred to cancer specialists in the first place! My understanding from other sources, is that bowel, breast and cervical cancer screening has been delayed throughout England due to Covid. Moreover, when screening has taken place, follow-up appointments have been cancelled. All three of these cancer types can be dealt with very successfully if treatment is timely. What a tragedy this is, my heart goes out to all patients who find themselves in this position. Before Covid, breast cancer surgery lists were ridiculously long in many parts of the country and even when patients eventually got to the top of the list, cancellations were all too common. As you know, I paid for my surgery and felt very guilty for jumping the queue, I think it was a wise decision though.
We were promised heavy thunderstorms today, but the weather is as hot and humid as ever. No rain for far too long, even the cats are fed up with it now. I see that the beaches in Exmouth are full of holiday makers. You and Raymond probably have to do the same as us and visit the beach outside of the holiday season. I see that Scotland will have the pleasure of Boris Johnson's company very soon as he takes the family for a camping holiday. As August is midge season, I wish him a pleasant time fighting them off. I'm sure that England's many disappointed state school students wish him the same, especially now that they have had their downgraded exam results. Eton and Charterhouse students have not had their results downgraded. This means that Oxbridge will be filled with toffs this year as fewer state school pupils will have the necessary grades. Since our Government is full to the brim with Oxbridge graduates 2020 will provide a bumper crop for the future.
On that happy note, I sign off.
Love to both of you,
Gill xxx
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Hi everyone
Happy Sunday! Off to Dubbo tomorrow for the week to work with respiratory physician for my first internship. Have to log up some hours with him and then start my second internship which is a bit more intense then I’m done with my NP masters
Life is crazy here with different states doing different things which is crazy! Hard for people in the Far West because we border 3 states and each state is doing different things! All in the name of politics. I’m not a supporter of domestic border closures as it lulls people into a false sense of security and they don't social distance. I think that symptom screening and locking down postcodes is a better option.
The debate over masks still rage and although I’m a firm believer that they should be used short term and in small areas only I’ll do whatever they request if it will keep people safe. Numbers are start to stabilise in Victoria with a complete lockdown. I would expect the epi curve to start to flatten dramatically here over the next couple of weeks.
I’ve just joined a state committee to review asymptomatic carriage for Covid to determine if it actually exists which should be interesting. The current line of thought is that it occurs only in the 48 hours prior to disease onset so we will be examining that area and Erving serology from past cases.
The fear is start to build re my upcoming drs appointment and I’m try really hard not to go to that dark place.
Stay safe and well everyone
Much love
Kath
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Hello Gill,
Thank you for your latest post.
I do think that hyperparathyroidism is very important in itself, as it is a nasty, life-threatening disease and I had no symptoms. It is especially important as well because of a possible (I say probable) connection with breast cancer. I think a parathyroid hormone test should be part of every blood test. If there is high blood calcium noted in a blood test then possible parathyroid disease should be pursued.
I also think that it is important to keep the relevant threads active on the forum here.
Other important side effects of breast cancer need to be kept active, such as neuropathy and lymphoedema. I know there are threads on lymphoedema and they are always interesting to read. As far as I know I have not seen a thread dedicated to neuropathy but there may well be one somewhere here. If anybody knows please let me know. There are no cures for either of them and all newly diagnosed breast cancer patients should be told about these possibilities. They can be caused by all three parts of the cancer journey – surgery, chemotherapy and radiotherapy.
I think you are right about how newly diagnosed cancer patients are not being referred to the hospital. I keep hearing this on the news and we know that time is of the essence when it comes to cancer. I do not think that everything should have been shunted aside because of the coronavirus. Goodness only knows how anything is going to get back to normal in the NHS.
I have to laugh when Boris Johnson says that he is going camping with his live-in and baby. I doubt that it is camping as we mere mortals see it. No doubt he will be popping into Balmoral!!
I do agree with you about what is going on with exam grades. It is shameful. As a former high school teacher I cannot believe that an algorithm has been used to award pupils exam marks. Where is the common sense in this? Mock exam marks could have been used, however, as a teacher, I was surprised to learn that some schools do not have written mock exams. That does not seem right. You cannot run a hodge-podge when you are dealing with state education. Everything is such a muddle and we have academies, comprehensives, secondary moderns, free schools, grammar schools and so on and so forth. Most of all, we need to get rid of private schools, education should not be based on ability to pay and these schools keep the class system going. Why is it that we have such an archaic country doing things that other countries laugh at?
It has been a much cooler day here but we still have not had enough rain.
We still have too much to do and I get frustrated about it. I would love a life free of lists!
I have so much that I want read and do not get time to do it. I have just bought the latest edition of the weekly newspaper The New European. It is a bumper edition for two weeks and there is a lot to read in it.
I have all sorts of information that I want to put on the thread. I picked up a free magazine at my local natural food store in Exmouth, entitled Just Natural, and was impressed with some of the articles in it, especially the one entitled The History of Pandemics: Man versus Flu. There is a lot of information in it about the history of pandemics going right back to the Roman Empire and there is also detailed information and the flu vaccine and influenza A. If you can pick one up I am sure you would find it interesting. You might want to look at www.justnaturalhealth.co.uk July-September 2020 issue 03.
On RT on Going Underground Raymond and I watched an interview with John Pilger about coronavirus and how the government has messed it all up and also about the way Julian Assange is being treated in Belmarsh Prison. We found it very interesting.
https://www.rt.com/shows/going-underground/497761-john-pilger-going-underground/
He mentioned, what I think must be films, which unfortunately I have not seen. They are The Dirty War on the NHS and the Coming War on China.
He said something that I truly believe "Liberty has become a privilege".
That is about all for today.
I truly hope we get some more posts.
Take care and best wishes to Michael.
Love.
Sylvia xxxx
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Hello Kath,
It was good to hear from you and I can see that you are still very, very busy. You will feel, no doubt, a great sense of euphoria when you finish your NP Masters.
Your life in Australia seems as mad as ours back in the UK. We feel that our government has not got a clue about how to deal with this coronavirus. It is very confusing because we are not behaving like one unified country called the UK and, in truth, we are not unified. Scotland, England, Wales and Northern Ireland are acting like four different countries and I feel that we are four different countries. On the radio and television, the leaders all come on, at different times, and spout the rules for their specific part of the UK and then we are left confused. Since I am in England I try to work out what the rules are for us and it is not always clear. In addition, the government can change its mind at a moments notice. In reality, Boris Johnson is the Prime Minister of the UK (unfortunately for us!) but the Premiers of the other three parts do their own thing, so it is a muddle. Really we should have a Federal system with a separate English parliament acting for England.
At the moment rules often seem contradictory. We now have lock-downs in specific places where coronavirus has gone up. This is especially so in the big towns in the north of England where there is overpopulation.
Our government seems not to have been able to introduce a properly working test, trace, and track. If we go to a cafe, pub or restaurant for example, we are asked for contact details. How do they know people are giving their correct details?
Raymond and I have kept ourselves mainly to ourselves and walked everywhere to avoid public transport etc. We have to wear mask is we go inside shops etc. but they are not comfortable and I do not think they are very hygienic. People are discarding them on the pavements etc. and they will end up in landfill.
Try not to worry about your approaching appointment. Keep busy and be sure to let us know how you get on.
When I have more time I shall post some information I have been reading about the flu vaccines etc. and I am sure you will be able to answer any questions that arise.
Take care.
Love.
Sylvia xxxx
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hello everyone, yes things are still crazy in Australia but as Kath said the curve should start to flatten soon. I had treatment last Thursday and all went well. Saturday we went for a drive and I did not feel so great as a sore throat and runny nose came on. Sunday I felt better but developed laryngitis. Had an appointment with my GP today but went and got a COVID test instead. Spoke with dr later and was advised not to take classes because resting my larynx was a priority. Hopefully it will pass soon and the test results will be returned as negative. I hope you all are doing well. Will let you know how things are going again soon. Best wishes
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Hello Helenlouise,
It was nice to hear from you and to catch up on your news.
I was sorry to read that you have not been feeling well and I do hope you will soon be feeling better. What kind of treatment did you have? Did you have some chemotherapy? It seems as though your immune system is low and that is why you have picked up these various ailments. Please take care of yourself.
I was glad that your doctor told you not to go to work. That is the last place you want to be if you have got run down.
It seems as though a lot of countries are on a merry-go-round with this coronavirus. Here in the UK we have local lockdowns, but we never know where they are going to happen. A lot of them are in northern cities with high populations. I do keep wondering where we are going.
It probably will not be too long before the flu vaccinations begin and I think confusion will set in about whether people have flu, coronavirus or colds!
Here in the UK the government seems to be very secretive about all things covid, especially the number of deaths. Suddenly 5,000 was deducted from the number 47,000 and I do not trust this. I think it is probably higher. There is so little common sense coming from the government and the whole covid situation has been a disaster.
That is about all for this evening. As you can see, the thread is very quiet. I think we are all exhausted from the surreal way in which we are all living.
Take care and keep in touch.
Love.
Sylvia xxxx
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Hello everyone, I hope you continue very well and taking care of yourself ..
helenlouise I trust your covid 19 test comes out negative and you finish recovering from your cold and your larynx
Mary, the strength you have is incredible and how you face things, now getting a small dog to educate and to accompany you, I trust the tick has not infected you with Lyme disease.
Sylvie, I think it's very good that you and Raymond are walking and not using public transport, I trust that they are still well and Raymond's leg continues to deflate.
Kath, I trust everything is going well with you and your work, I think the work you do is wonderful. And do not be afraid of the next appointment, everything will be fine.
Gill, as always thanks for your words-
I have been very tired in the last few days, and last Thursday it gave me an attack of nostalgia and sadness, sometimes I think that the end is near for me, after so many dark, sad and tired days, one day boom, I wake up with the ability to make breakfast, vacuum, fix clothes, walk inside the apartment without my feet hurting ... I feel that the 7 days I have off from xeloda help me not to get so bad, my breathing it is improving, doing some lung exercises with some balls to blow, and for lymphedema, I got a big pilates ball and a piece of broomstick, so I'm doing 10 times each movement with the stick, forward, backward, upwards. Then I bring my knees up to my chest, like an exaggerated gait, 20 times. I feel that my leg pain relieves a lot.
For the feet and hands, I am peeling a leaf of aloe, and I put the crystals in a plastic bag in the freezer and try to put my feet there two or three times a day, I feel that it makes me very wet and relieves the pain, the heat and discomfort.
I have gone down to the green area two or three times at 6 am, to walk barefoot through the meadow, I liked the feeling of the grass on my feet and the dampness of the dew has also given relief to my soul. if I wake up later I don't go out since there are people walking the dogs, or walking along the pedestrian paths, I try not to cross anyone, although everyone wear the mask.
In Colombia, the president has forgotten that he represents only one of the three powers, the executive, since Alvaro Uribe is home from jail, for having tentatively paid some witnesses to accuse an opposition senator, our president has become in his defender by using the national media instead of using his position to end inequality, drug trafficking, violence and the pandemic.we are running out of constitutionality in this country.
The Congress of the Republic, was having zoom sessions, when the country is fading
the legislature, where each representative earns 34 million pesos, or 35 times what a worker earns with the minimum wage, they were in session via zoom all this time, only the opposition attended the congress hall. And our country is secular since the constitution of the year. and our president is showing his Catholic beliefs as if they were those of the country, he is shown at mass on national television, he is shown entrusting himself to certain saints, instead of working to stop the pandemic , drug trafficking, violence, etc.
In my city, Cali, this week, they killed five children between the ages of 12 and 15, because they entered a sugar cane plantation that is next to their poor, marginal neighborhood and without any type of recreational areas. Shots, they cut his throat ... that has made me feel very, very bad, because also many fellow citizens say "they killed them for something" here life is worth nothing ... these were young black people who had come to this city displaced from other areas of the country for the violence.
And yesterday they killed 9 young people in the south of the country, in Samaniego, who were celebrating their reunion in times of pandemic. There were about 23 at the meeting, and some people arrived and shot indiscriminately and killed 9 young men, white people, university students ... but here in Colombia they say they were killed for something ... their lives don't hurt ...
Today is a holiday in Colombia, and the residential units where I live, groups of musicians come to the goal to serenade us to brighten the day and it is also their way of getting money, since the economy has been reduced by 15% in the last 3 months.
I am writing on a clone computer. My laptop was damaged in May, and I have not been able to replace it, it is very expensive, I am not going to the university to work, but I work from home about the student support website, but I have not worked at all since May .. I have asked, almost shouting already, that the university give me a laptop that has a camera, sound, programs for the page and more than 3 months have passed and nothing they give me --- I was reading about helplessness and I think I'm already in that condition.
This letter has become long, but having read them also motivates me to take better care of myself and has made an appointment with the endocrine, so that I can check how my thyroid cancer is going-
a hug
Marias
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Marias - so nice to hear from you and to know that you do have some bright days in between the down days - life is really hard sometimes - isn't it?
Kath - you are being kept so busy and now especially with the covid virus which no doubt you will be studying in great detail.
Mary - hope little puppy dog continues to keep you distracted - I miss my dog so much.
Rosie - your posts are always so lovely to read - you have a kind word for everyone.
Helen Louise - hope you don't test positive for the virus?
Sylvia - glad to hear that you and Raymond are keeping as well as you can be - you sound so busy all of the time, and personally I see that as a good thing - less time to think about all the negatives in our current world situation.
I just got back from an ultrasound of my heart - just to check on a heart murmur which I have had for a very long time. I hope the reading of it comes back with nothing untoward. I am getting weird sounds in my lungs - like a gurgling - which are somewhat disconcerting. The doctor listened to my lungs and says they are clear. I will be have another CT scan in December. I have no pain, no shortness of breath - so I just have to accept how I feel and hope it is nothing to worry about.
We are having very warm weather here in Vancouver - a bit too hot for my liking, but we know it will not last for long. Everyone I know seems to suffer from covid fatigue - it is becoming a bit tedious with all the extra measures in place - but I know that most of them are generally good. I had a picnic lunch with some of my breast cancer friends - all socially distanced and in a park - it was so nice to see them. Tomorrow my scrabble group is starting back - it will be outside with the distancing and wearing gloves to pick up the tiles - kind of strange - but again it will be nice to see my scrabble buddies.
We may try to get away for a few days mid September once schools are back and places are less busy - although - to be honest I am in no hurry to eat out anywhere - so if we do go away - it will not be far. and I will take all our own food with us. It will mostly be simply for a change of scenery - somewhere by the ocean with a nice view.
Not sure if I mentioned that we are going to be welcoming a new grandson in October - so that is a nice bit of cheery news and something to look forward to.
Keep safe, stay well and most of all stay calm.
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COVID negative so YAY! I didn’t really expect it to be otherwise as we have no cases locally and we are practicing preventative measures. My treatment last week was herceptin and perjeta which I now have three weekly. My last heart scan was good too. So no impact there as yet. I don’t feel too bad today but voice is still hoarse, so trying not to talk at all. That’s way harder than I thought! It’s good to read the posts and hear from you all. The whole website seems quieter than last year. I have joined some BC Facebook groups but it just seems like random posts. Some interesting information but hard to know who’s who and no real conversations or an easy ability to get to know people. So much prefer this space. Take care one and all xx
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Hello Marias,
It is always such a pleasure to hear from you and that you have something nice to say to each person in the group.
Raymond and I continue to face each day as it comes. Each day brings something different to face and we do this as best we can. Raymond's leg is more or less normal and the swelling is mainly in the ankle and the foot. I think this is lymphoedema now more than oedema. I think the lymph has been damaged because of the long incision from ankle to knee to remove the large saphenous vein to use for the bypass. As we all know, there is no cure for lymphoedema and the solution is to keep physically active, which is what we are both doing.
Thank you for giving us all such a detailed account of what is going on with you in your life in Colombia. I was sorry to read that you have been very tired and that you have had feelings of nostalgia and sadness. Keep telling yourself that you are going to survive all this. When you are feeling sad come to the group and get all of these negative feelings out of your mind. We are here to help you and we all understand about dark days, where the mind becomes full of doom and gloom.
I was so glad to read that you have good days during which you feel more able to deal with everyday things, such as making breakfast, vacuuming, dealing with clothes and most important of all walking inside your apartment without your feet hurting.
I am not surprised to read that you feel better when you are having seven days break and you do not have to take the drug Xeloda. I think we can all remember the ups and downs of chemotherapy drugs and how much better we felt when we were not having them. We all know how toxic and damaging the drugs are but they help to keep us alive, despite all the nasty side effects an the long term damage to our body.
I admire you greatly for all the effort you are making to help you keep going. I was very interested in what you are doing for exercise. I was trying to visualise your lymphoedema exercise with a big Pilates ball and a piece of broomstick. It sounds quite difficult. Do you have a photograph? For your lungs are you blowing up balloons? Your are very courageous.
I was very glad to read that you have been able to go down early morning and do some walking barefoot through the meadow. I think that the isolation of the coronavirus pandemic has made us all appreciate nature more and how beneficial it is to get outside. Keep up the good work.
I was very interested to read what you are doing for your feet and hands. I was interested to know that you are peeling a leaf of aloe and putting the crystals in a plastic bag in the freezer and then putting your feet on the bag. It is good that this gives you relief from the pain, heat and discomfort. When you mention aloe, is this the same as aloe vera? Year ago I had an aloe vera plant and I used to cut pieces off to use on the skin. I do have a tube of aloe vera gel that I find very useful. I bought it when I accidentally burnt my arm and it was very soothing. I am now using it to rub into the soles of my feet to help with the strangeness of the neuropathy. I then rub in special foot cream with 10% urea. All this seems to help.
I think we are all going through, more or less, the same procedures to deal with the coronavirus. Really, it is all about keeping our distances and wearing masks. Here in the UK we have to wear them more and more in enclosed places. I find them very uncomfortable and warm.
It is always interesting to read about what goes on in your country. I am sorry that life is so difficult. It is always about greed and inequality with the rich and famous tramping on ordinary people. Some countries are much worse than others.
I do hope that things will change in your country, but as the famous saying goes, "The more things change the more they stay the same"! We also have a government that does not really help the down-trodden in our society. It is only the privileged that have power. We have children going hungry, we have poverty, people living on the streets and others in mansions, and so on and so forth. I actually think it is getting worse and that freedom of expression is getting curtailed.
Marias, I am going to have to take a break, but I shall try to resume my post a bit later on.
It is so enriching to talk to you.
Take care of yourself, keep safe, keep strong and keep hopeful and optimistic. I remember the words of a song that Joan Baez used to sing many years ago. I used to love this singer, especially when she was singing "We shall overcome one day" (the battle hymn of the Republic).
Abrazos.
Sylvia xxxx
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Hola marias
Siempre es un placer saber de ti y que tienes algo agradable que decirle a cada persona del grupo.
Raymond y yo seguimos enfrentando cada día como viene. Cada día trae algo diferente que enfrentar y lo hacemos lo mejor que podemos. La pierna de Raymond es más o menos normal y la hinchazón se encuentra principalmente en el tobillo y el pie. Creo que ahora esto es linfedema más que edema. Creo que la linfa se ha dañado debido a la larga incisión desde el tobillo hasta la rodilla para extraer la vena safena grande que se utilizará para el bypass. Como todos sabemos, no existe cura para el linfedema y la solución es mantenernos físicamente activos, que es lo que estamos haciendo los dos.
Gracias por darnos a todos un relato tan detallado de lo que está sucediendo con ustedes en su vida en Colombia. Lamenté leer que ha estado muy cansada y que ha tenido sentimientos de nostalgia y tristeza. Sigue diciéndote a ti mismo que vas a sobrevivir a todo esto. Cuando se sienta triste, venga al grupo y elimine todos estos sentimientos negativos de su mente. Estamos aquí para ayudarlo y todos entendemos acerca de los días oscuros, donde la mente se llena de pesimismo y pesimismo.
Me alegró mucho leer que tiene buenos días durante los cuales se siente más capaz de lidiar con las cosas cotidianas, como preparar el desayuno, pasar la aspiradora, ocuparse de la ropa y, lo más importante, caminar dentro de su apartamento sin que le duelan los pies.
No me sorprende leer que se siente mejor cuando tiene siete días de descanso y no tiene que tomar el medicamento Xeloda. Creo que todos podemos recordar los altibajos de los medicamentos de quimioterapia y cuánto mejor nos sentimos cuando no los tomamos. Todos sabemos lo tóxicos y dañinos que son los medicamentos, pero nos ayudan a mantenernos con vida, a pesar de todos los efectos secundarios desagradables y el daño a largo plazo a nuestro cuerpo.
Lo admiro mucho por todo el esfuerzo que está haciendo para ayudarlo a seguir adelante. Estaba muy interesado en lo que está haciendo para hacer ejercicio. Estaba tratando de visualizar su ejercicio de linfedema con una gran pelota de Pilates y un palo de escoba. Suena bastante difícil. ¿Tienes una fotografía? ¿Para tus pulmones estás inflando globos? Eres muy valiente.
Me alegró mucho leer que habías podido bajar temprano en la mañana y caminar descalzo por el prado. Creo que el aislamiento de la pandemia de coronavirus nos ha hecho a todos apreciar más la naturaleza y lo beneficioso que es salir a la calle. Sigan con el buen trabajo.
Me interesó mucho leer lo que está haciendo para sus pies y manos. Me interesó saber que estás pelando una hoja de aloe y colocando los cristales en una bolsa de plástico en el congelador y luego poniendo los pies en la bolsa. Es bueno que esto le alivie el dolor, el calor y la incomodidad. Cuando mencionas aloe, ¿es lo mismo que aloe vera? Hace un año tenía una planta de aloe vera y solía cortar trozos para usar en la piel. Tengo un tubo de gel de aloe vera que me parece muy útil. Lo compré cuando accidentalmente me quemé el brazo y fue muy relajante. Ahora lo estoy usando para frotar las plantas de mis pies para ayudar con la extrañeza de la neuropatía. Luego froto una crema especial para pies con 10% de urea. Todo esto parece ayudar.
Creo que todos estamos pasando, más o menos, por los mismos procedimientos para hacer frente al coronavirus. Realmente, se trata de mantener nuestras distancias y usar máscaras. Aquí en el Reino Unido tenemos que usarlos cada vez más en lugares cerrados. Los encuentro muy incómodos y cálidos.
Siempre es interesante leer sobre lo que sucede en su país. Lamento que la vida sea tan difícil. Siempre se trata de codicia y desigualdad con los ricos y famosos pisoteando a la gente común. Algunos países son mucho peores que otros.
Espero que las cosas cambien en su país, pero como dice el famoso refrán, "¡Cuanto más cambian las cosas, más permanecen igual"! También tenemos un gobierno que realmente no ayuda a los oprimidos en nuestra sociedad. Solo los privilegiados tienen poder. Tenemos niños que pasan hambre, tenemos pobreza, gente que vive en las calles y otros en mansiones, y así sucesivamente. De hecho, creo que está empeorando y que la libertad de expresión se está restringiendo.
Marías, voy a tener que hacer una pausa, pero intentaré retomar mi puesto un poco más tarde.
Es muy enriquecedor hablar contigo.
Cuídese, manténgase a salvo, manténgase fuerte y mantenga la esperanza y el optimismo. Recuerdo la letra de una canción que cantaba Joan Baez hace muchos años. Me encantaba esta cantante, sobre todo cuando cantaba "Un día venceremos" (el himno de batalla de la República).
Abrazos.
Sylvia xxxx
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Hello adagio and Helenlouise,
Thank you so much for your posts. I shall answer later on as I have just done a long post to Marias.
It is so good to see the thread come alive again and I am so proud of our group.
I do hope Mary is alright and that she will pop in soon.
We must not forget Jags56 either in India where there are so many cases of coronavirus.
We are always glad to hear from past posters on the thread, even if it is only a line.
Best wishes
Sylvia xxxx
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https://youtu.be/DomoZIBKGjoDomoZIBKGj