Calling all triple negative breast cancer patients in the UK
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Hello everyone in the group, Gill, Mary, adagio, Kath, Helenlouise, cocolala.
I just wanted to wish you all a happy Easter. There does not seem to be much activity lately, so we have to assume that the newly diagnosed have enough information now that they do not need to post. I also think we are all suffering from coronavirus fatigue.
Best wishes.
Sylvia xxxx
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Hello Gill and others. This is where I was doing a lot of reading recently.
Topic: Zometa and Osteonecrosis, in the Forum: Bone Health and Bone Loss
I thought it might be of interest to people.
Love.
Sylvia xxxx
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Hi, Sylvia
Thanks for Easter greetings, I will go to Good Friday service today and then again to service on Easter, that is about all I have going on this weekend except for Saturday, when I am invited to friends' home for dinner.
Could you post the link to your seafront area again? I found that entertaining to look at, but have no idea where it is anymore.
I have been busy with the minutia of Spring, getting lawnmowers tuned up and so forth. We have hit the freezing mark in temperature the last couple of nights, i didn't get any plants that I had to worry about so that was okay with me. I am trying to simplify life somewhat, some things are hard to let go, but better let go if you know what I mean. I am getting my very old carpets replaced in a couple of months, and I need to empty closets, this will be very difficult but I'm sure I will feel better if I get it done.
I would not like to take the Bone-building drugs either, so far so good in that area, I hope it continues. Vitamin D is very helpful with keeping up bone strength, supposedly it's even better than calcium.
I do hope you and Raymond will get your other dose of Vaccine soon, I do find it a rather freeing feeling to have it done. Life around here is feeling much more normal, but it is always jarring to see our President and others on TV with their big masks, I am beginning to think they just want to keep us masked and locked down, but then I have a suspicious nature. I do realize that not all the States are like ours, some are in various states of vaccine readiness and compliance.
As for my upcoming appointment with different oncologist, the lady who called me about it told me the new doc's name and I only questioned her about the MO's credentials. My previous doc was a BC Specialist, this new one will be a General Onco. She apparently thought I was questioning the doc's origins, and hastened to tell me she was British, in spite of her very long obviously Indian name. I thought this funny, since my previous Onco was also Indian. Anyway, that's why the British came up in the call, she apparently thought I was put off by the name. It seems I would now have to drive for hours to see a BC specialist, so I will keep my appointment and see what happens.
Happy Easter to all; Sylvia, Gill, Adagio, Kath, HelenLouise, Cocalola!
Love, Mary
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Hello Mary,
It is always nice to hear from you.
This is the link for Exmouth seafront:
https://www.exmouthcam.co.uk/webcam/
This is the link for the centre square in Exmouth.
https://www.exmouthcam.co.uk/strand/
It is 6 pm here in the UK and the seafront is beginning to empty, but it has been busy over the past few days. We have been looking at the webcams and we noticed that the main pub there has already put out all the table and chairs ready for Monday April 12th when they can open up outside and serve meals and alcohol.
It sounds as though you are very busy with all your Spring cleaning. It is good to simplify life especially as one gets older. I hope you find it very therapeutic. Raymond and I, as you know, are minimalists so we never have a lot of sorting out to do. However, we would like to move to a smaller apartment but there is nothing that suits us here in Exmouth. We think we may be too old to move now, but we are fed up with where we live.
Like you, I am taking vitamin D, high dose, and the only other supplement that I take is a probiotic. Raymond takes the same. He stopped most of his medication some time ago and he is just taking a minimal dose of a beta-blocker and low dose soluble aspirin. As far as we can tell, the doctors seem to be saying now that aspirin is of no use and they are switching patients to an NOAC anticoagulant and the most popular one is apixaban. Are you familiar with this?
Raymond and I are due to have our second dose of the AstraZeneca vaccine on April 28th. We really have no choice but to go ahead despite all the bad publicity. We are told there have been 30 cases of rare clots out of 18 million vaccinations. There has also been some bad publicity about Pfizer, some kind of clot.
I was interested in what you had to say about your oncologist. I wonder if there is much difference between a BC specialist oncologist and a general oncologist.
I had to laugh about the lady who called you hastening to tell you that the new oncologist was 'British'.
This word British is meaningless. It is not a word we ever use. For us you are either English, Scottish, Welsh or Irish, but for some reason British appears everywhere. As you know, we cannot make up our mind about the name of our country. We are the United Kingdom (that is a laugh because we are disunited), Great Britain, British Isles, and so on. Our passport is called a 'British Passport'! Confused? Aren't we all? At least Raymond and I only answer to English! We do not like the fact that the parliament in England has always treated the rest of the country like colonies! We have recently filled in a census form that has some ridiculous questions about what nationality you are and some really stupid questions as well.
On a serious note, we are sad about the way our country is now. It is not the country we were brought up in.
What have you been reading lately? We have not been reading as much as we used to and have not really found a book that has motivated us.
We have grown really weary of Covid, the state of the world, the uninspiring leaders and the general greed, self-interest and lack of responsibility.
We have been watching a channel on the television called Forces TV. From 7 pm they have some really funny sitcoms from the 1980s here in the UK. The titles of these are Citizen Smith, After Henry, Good night sweetheart, Hardware, Bless this house and probably our favourite Duty Free. We have a good laugh and go to bed more relaxed than after watching the dreadful News. Have a look at them if you can. They are typical English humour and we have to laugh when a notice comes up warning viewers that they are the humour of the times, that is 1980s. Everything is so politically correct now that they could not be made today.
By the way, what do you think of WOKE? It is supposed to have arrived here from America.
That is about all for now. Have a Happy Easter and let us hope we soon get back to a more normal life. I think the thread is suffering from Covid fatigue. Let us hope, also, that adagio gets in touch soon. I have given up on Marias and Hanieh and fear the worst.
Love.
Sylvia xxxx
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Hello Sylvia,
Thank you for pointing out the Zometa thread. I hadn't noticed it but will certainly be having a closer look over Easter.
Love,
Gill xxx
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Hi Mary,
I'm completely hooked on the Exmouth beach webcam. I'm still hoping that Sylvia and Raymond will organise a wave for us one day.
Wishing you a blessed and peaceful Easter.
Love,
Gill xxx
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I am sending warmest greetings andwishing you all a happy and safe Easter!
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Hi helenlouise,
Sending you Easter greetings from a warm(ish) sunny South Norfolk. Wishing you a peaceful Easter holiday.
Gill x
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Hello all,
A belated Easter greetings to you!
I've done my first chemotherapy last Wednesday. Overall I'm coping well except yesterday which is Day 5, I'm more tired and having body ache. Oncologist and nurses did not believe in icing, but I did bring ice packs and cooler bag, and hid it under blanket, just nice for my feet. As for my hands I just hold the ice pack under the blanket. Due to the pandemic, the daycare center does not provide lunch. Reason being everybody will open up their face mask to eat. I don't understand, what's the difference with everyone bringing their own food and eating because we still have to eat. Now I have to think what simple food I can prepare early morning to bring to hospital.
Prior to my chemotherapy, I went for PICC insertion. I regret that I did not delay chemo for one week to wait for the usual radiologist who always works with my oncologist (he was on holiday). Instead, I opted for another radiologist and the whole procedure was a nightmare.
Firstly, after changed to hospital gown and waiting at the radiology dept, his nurse told me he has an urgent case and has gone to a surgery (helping in a surgery i guess, since he is a radiologist not surgeon), and she didn't know what time he would be back, probably 2-3 hours. And she said he gave me green light to have breakfast (I was fasting for the procedure), which puzzled me because if the procedure can be done without fasting, why did they ask me to fast in the first place?
I went back to oncologist and told the staff I would like to delay the PICC insertion until my next chemo session, and I would like to start chemo first via IV line. The staff called radiology and they told her the radiologist went for covid vaccine injection and would be back in half an our time, so don't break the fast. Huh? Meaning he asked his nurse to lie to me about having urgent case?!
When the procedure started, I was given pain killer injection on my left arm, but it's so much pain when he poked me on my right arm. He poked me several times, and I didn't know that those were unsuccessful insertions. He kept scolding the nurses, especially one whom I guess is a training nurse. And he sighed in front of me, and clicked his tongue on frustration. To be honest, I was in so much pain until tears rolling down, and with his sighing and sound I felt even more nervous and upset. In the end i was injected again and he told me is pain killer, which I think is anesthesia. Immediately I was poked again (finally a successful one) with pain, and frankly I only felt numb on the second stitch when he stitched me up. OMG this is truly nightmare for me.
I did not open my eyes at all until everything is done. The nurses had to wash me instead of wipe because there is so much dried up blood on my arm. The nurse told me usually another radiologist would give anesthesia at the very beginning, and if the procedure were done by other I wouldn't be suffering so much.
Now my arm is uncomfortable, feeling a bit sore the entire arm. Still a bit swelling. Hopefully it will be better soon.
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Hello Sylvia,
My friend is 67, I'm afraid I don't know very much about her cancers other than they were both triple negative. She hasn't seen her pathology report and hasn't pushed for answers. The appointments she has had seem rushed and sometimes confused. One breast surgeon she visited hadn't read her notes and had no idea that she'd recently been diagnosed with a second TN tumour in the other side. The treatment we receive really is a postcode lottery and I'm afraid that far too many women are being short-changed.
I did ask for an ultrasound on my mastectomy side, but was told that this was no longer offered unless there was a problem. NICE reported that routine ultrasound had no impact on earlier diagnosis of breast cancer recurrence and the NHS were advised to stop offering it at annual checkups.
Biphosphonates are a concern. A friend with osteoporosis took them daily in tablet form and has lost several teeth. She's unable to have implants as her jaw is no longer stable and she hasn't been offered any solution. My breast surgeon has told me that I may be offered five years of zoledronic acid infusions rather than three as NICE were considering extending its use. I've decided to stop at the three year mark.
Weather here is sunny but very cold for April. It tried to snow several times yesterday, we needed the log burner blazing all day.
Keep safe and well,
Love,
Gill xxx
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Hello cocolala,
What an appalling day you had. PICC lines are simple to insert in the vast majority of cases - as long as the practitioner is properly trained. Mine was done by a nurse who had specialised in this procedure for several years. Like you, I needed to change into a hospital gown. I was given a local anaesthetic which was very effective. Ultrasound was used to help guide the nurse and the whole procedure took just minutes to complete, there was no more bleeding than after a blood test. I don't know why you would have been asked to fast as you weren't going to be offered a general anaesthetic or sedation. From what you have said I can only assume that your radiologist had never inserted a PICC line before. He sounds dangerous, I hope you've reported him. I also hope that the procedure was done in sterile conditions, watch closely for any sign of infection.
As for food, I'd rather take my own as it's safer. Remember you will be so much more susceptible to food poisoning during chemotherapy. In my chemotherapy unit sandwiches, crisps, biscuits, yogurt and fruit was bought round by volunteers. I didn't eat any of it.
I do hope that everything goes smoothly from now on. If not, don't be afraid to complain or ask questions or ask them to stop.
Gill X
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hi cocolala, terrible time you have had. Let’s hope the routine of chemo settles in for you and your side effects are minimal. Wishing you better luck. Rest up. X
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Hello Gill,
I do agree with you that something has gone seriously wrong with breast cancer treatment and I cannot believe the way your friend has been treated. Everything seems to have been so dumbed down. Women are definitely being short-changed. I do urge every patient to stand up to be treated properly and to fight their corner.
I am not impressed about the fact that you can get an ultrasound only if someone at the hospital thinks there might be a problem. I would think that ultrasounds are probably less harmful than mammograms and maybe even cheaper. From what we have heard about mammograms and false positives and false negatives, I do not think they are any guarantee of proper diagnosis. How many times have we heard on these forums from women who were diagnosed with breast cancer after being told, after a mammogram, that all was fine! How safe are mammograms when they are done so often? I never had any mammograms until I had a diagnosis of breast cancer. I did not want to subject my body at age 50 to years of mammograms. I did very thorough breast exams and my tumour appeared from nowhere. In this country mammograms start at about 50 and go on until 70. I had very few during those 20 years.
I think all women should be concerned about bisphosphonates. Necrosis of the jaw sounds horrific.
I think all of these drugs are there to make money.
I would not contemplate taking them.
I have always said on this forum that I have always been positive about being triple negative tumour status. I have been able to be drug-free for year and make food my medicine.
It is a dull and wet day here in Exmouth and I think Raymond and I are in low spirits. The so-called briefing yesterday was a farce. Most of it had already been leaked and we had the same old boasting. I have just about given up on politicians and doubt that I shall vote in the coming local elections. Today it is all about fulfilling ambitions and not dedication to justice and fairness.
Raymond and I have taken to watching old sitcoms from the 70s and 80s on Forces TV. They start about 7 pm in the week. You might like to watch them for relaxation. They are on Freeview 96. They are not politically correct! Our favourites are Duty Free, Citizen Smith and After Henry. Citizen Smith is about a political activist called Wolfie, whose motto is Power to the People! We really enjoy it.
I was reading through one of the threads the other day and came across a lady from India who posted on here some time ago. Her name for short is Sid. I do remember her and she did mention Jags56. It got me wondering what has happened to Jags. I clicked on Sid's name and was able to read her posts in the past. I saw, when looking, some past posts from Marias and a beautiful photograph of her on her 55th birthday.
That is all for today.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Thank you for your interesting post. I'll try to answer after the weekend. Unfortunately, I had to rush Michael to A&E yesterday with heart problems. He was in for 10 hours, many blood tests and angiograms later he was told that as the tests indicated that he may have had a heart attack, he would need to stay in overnight. The consultant, on the other hand, said he could be discharged (no bed?) and an echocardiogram would have to be undertaken soon, no date given! I waited outside in the hospital car park during all this, so if not beside him I was as close to him as possible should anything happen. Thank heavens for mobile phones. Our daughter phoned at intervals to clarify test results and ensure that her Dad was having the care and tests he needed.
Alice told Michael that he needed to ask for a discharge letter as this would advise him about tests needed and the cardiologist who would be dealing with him from now on. Apparently, discharge letters aren't given but his GP would be written to today by both the junior doctor and the cardiologist he saw yesterday. It seems that there has been some damage to Michael's heart, the echocardiogram will give a clearer picture.
Try to enjoy your weekend, despite the mess the country's in and the miserable weather.
Love,
Gill xxx
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Hello Gill,
I have just read your post and I am shocked and concerned. I do hope Michael will be all right and that he will be treated as quickly as possible. Your experience with the ten hours that Michael spent in A&E while you were sitting outside is reminiscent of what Raymond went through, except that he was in A&E in Exeter and I was at home in Exmouth. He had gone to Exeter by himself, felt unwell and went to A&E. I can imagine the stress that you were going through. I do hope the consultant did not send him back home because of a bed shortage, but it would never surprise me. I remember with my cousin when he was being discharged without informing us, and I was told at the last minute, that the doctor said the Discharge people were completely unscrupulous when they decide to discharge a patient. I was relieved to read that your daughter, Alice, was available by mobile phone to help you.
I would think that Michael needs to have that echocardiogram as quickly as possible. I do not think he should have been discharged but hospitals are doing what they like these days.
Please keep us informed and take care of yourself. If you feel you need to speak in private, you are welcome to PM me.
I do wonder what is going on these days. Two weeks ago an ambulance arrived here in our complex, was here a long time and then departed with blue lights blazing. By a process of elimination I knew that one of our residents, the youngest one, a man living alone, must have been the one in trouble. I know him well so I emailed him at the hospital where Raymond was. He was in Cardiology, with some kind of heart problem and that were keeping him there until they had installed a pacemaker. Two weeks on he is still there waiting and he was also going to have an angiogram.
We are thinking of you and keeping our fingers crossed for Michael. Give him our best wishes.
It is raining now and not very Spring-like.
Love and best wishes.
Sylvia xxxx
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Hello all,
Second Paclitaxel done and so far no side effects other than itchy rashes on my neck. I developed this on Day 5 but I'm not sure if it is related to chemo. I also have some tiny itchy rashes on my fingers.
I did complain on the radiologist on the PICC issue and customer service came to talk to me during my chemo last Wednesday. They asked if I'm providing the info as feedback or I want something in return. If I want something then they will have to ask the radiologist to provide report, otherwise they will only report it to the management. I have yet to reply them on this, I feel weird that I have to tell them 'what I want from the complaint'.
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Hello Gill,
I thought I would just post a few lines to say that we are thinking of you and Michael and hoping that all is well and that Michael has made good progress since Friday.
I do hope the echocardiogram will not be delayed. It seems to be all waiting.
It is Monday, partial liberation day, and people seem to be rushing to the shops. It is hard to believe that people have been queueing since 6 am! Raymond and I have stayed indoors.
It seems strange on the thread without you. New threads keep being created!
Love and best wishes.
Sylvia xxxx
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Hello cocolala,
Thank you for your post. I was glad to know that so far so good with your chemotherapy.
It is difficult to say whether your itchy rashes are related to the chemotherapy or not. We all react differently and they could well be due to the treatment. Your oncologist should be able to tell you whether this rash is a possible side effect.
I can understand what customer service means about the fact that you complained about the radiologist and the PICC issue. It seems to me they are asking whether you are just pointing out what happened so that it can be noted, or whether it is a complaint where you want to pursue the matter further and investigate the radiologist. Of course an investigation would be much more serious and probably bureaucratic. The whole matter would have to be looked into.
I hope all continues to go well.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Thank you for your kind thoughts. You know the anxiety that I'm experiencing only too well. At least Michael is here with me and not in a hospital miles away as Raymond was. The junior doctor treating Michael insisted that he needed to stay on a ward overnight as his results suggested that he may have had a heart attack. After about half an hour he reluctantly changed his mind and told Michael to go home and come back first thing in the morning. I'm fairly sure there simply wasn't a bed. His 'essential' morning appointment was cancelled. There were no trolleys lining the corridors as there usually are, as A&E had no trolleys either. The medics were doing their best, there simply wasn't enough of them. Michael sat on a hard plastic chair for over ten hours, he was exhausted. Nothing to eat and only cold water to drink.
Michael had a telephone appointment with his GP this afternoon, the junior doctor and cardiology consultant said they would write to his GP to talk about what needs to happen next. I'd assumed that writing, meant emailing. Apparently not, so the GP was as much in the dark as Michael. Until she knows more she's can't do much. Apparently he shouldn't drink coffee or alcohol and is only allowed gentle exercise. Michael has gone from staying overnight to returning to the hospital first thing in the morning to sitting around waiting for his GP to receive the appropriate medical information. It's so muddled.
I'm sure many in England enjoyed there semi freedom today. Like you, I stayed at home. The Covid infection rate is probably rising as I write, especially with families mixing over Easter.
I think the moderators might need to explain to posters that most questions do not require them to create a new thread. There are plenty of well established threads to choose from.
Hope everything calms down after this week so that you and Raymond are able to enjoy a quiet walk again and perhaps risk a visit to the shops.
That's about all for now. Take care.
Much love,
Gill xxx
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Hi, Sylvia
Thanks for the links viewing Exmouth, I like to look at them, so far all is quiet!
I haven't been busy with cleaning, that's the problem. I have a lot of clothing to get rid of, for some reason I cling to old clothing, even if I no longer wear it. I think it's a psychological problem from childhood, when I had almost no nice clothing to wear after my mother died. I wore hand-me-downs that didn't fit after that, and sometimes one of my lovely aunts would make a simple cotton dress for me. I really can't remember what I wore in the winter, I guess whatever was at hand. I had 4 older brothers so it's hard to say. Anyway, now I have much too much of nice clothing and shoes, more than I can use so will try to rid myself of some of it. I hope you can find a smaller place, if that is what you want. Perhaps you need a little cottage, with borders of flowers!
I have not heard of apixaban, although I have heard of its' non-generic name, Eliquis. It's one of the newer blood thinners, but that's all I know about it.
The numbers of clots turning up after the Corona vaccines are really small, when one considers how many shots have been given. It's really frightening people, but I think it's a slim chance that it would happen. I have finding that quite a few people are refusing the vaccines, including one of my brothers (76 years old), his wife and both kids. Most of the people refusing seem to have some kind of autoimmune problem, and they are afraid the vaxx will make it worse, however to me it seems that getting Covid would be even worse. If in a family, and the wife is afraid to get the vaxx, then the husband goes along with it; I know 4 couples like this. I hope everything comes out allright, this has been so difficult for everyone.
Thanks for explaining the use of the word British for me, it makes sense, in the sense that it doesn't make sense! By the way, I heard on the News that the prominent strain of Covid now here in USA is the British variant, just to add to the confusion.
As far as reading, I have not read much that's very good, I have some books on my nightstand and read until I fall asleep but they are pretty forgettable. I went to the local bookstore a while ago and asked if there were any new book series out there. They were not very helpful, I looked around and speaking of WOKE, that is the type of books that had top placement, I will not spend a dime on them.
As far as what I think of WOKE, I think the whole movement is an attack on Freedom of Speech. We are supposed to fall in line and believe that down is up, there are more than 2 sexes, 2 + 2 is not 4 and so on and so forth. As usual, I think the great majority of us are too well-mannered and just want to be left alone, which leaves the very noisy minority to get their way while we are looking elsewhere. I think Politically Correct is now called Woke.
I'm glad you are finding something fit to watch on TV, humor is always good. The new comedy series are awful, in my opinion. I have been checking TCM (Turner Classic Movies) this month, this channel is showing Oscar Winners all month, from the times when there actually were good, original movies being made.
I have been working on this post a while, I started it in Word so I wouldn't lose it, and then my days have gotten consumed by other things. I will post it, and then see what's going on in the Thread. I share your opinion about Marias and Hanieh, I have no good ideas there.
Talk soon, love, Mary
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Dear Gill
I just checked in and am late to see that you and Michael have had a very upsetting time due to Michael's heart attack and subsequent damage, and all the mess-up at the hospital. How awful to not feel confident in the care one is given, thank goodness for your daughter and her support. I wonder if Raymond and Michael have somewhat the same problem? I am thinking of you from very far away, I do wish I could feel more helpful to you. God bless you both and look over you and take care of you. I'll be a better thread-checker so I can keep up with what is going on.
Love, Mary
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Hi Mary,
We're hoping that the damage to Michael's heart won't be too serious but won't know until he's given more tests, especially the promised echocardiogram that he should have had whilst in hospital. I'm concerned that he's had several close male relatives die suddenly - their hearts simply stopped. None of them had a history of heart problems. Covid is blamed for the long waiting lists in England, but years of underfunding is more to the point.
As you can imagine, not being allowed to go into the hospital with him was frustrating and upsetting for both of us. I listened to the radio on and off, just to catch up on the news. It turned out that it was just long enough to flatten the battery. A friend drove the ten miles to A&E with jump leads to start the engine. A very stressful day all round!!!
Singing still not allowed in Churches here, so no joining in with all those well loved Easter hymns - though there did seem to be a certain amount of mumbling and humming going on behind the masks.
Keep well Mary and good luck with sorting out your clothes and shoes I'm supposed to be doing the same.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post. I do hope Michael will get that echocardiogram soon as this waiting is not acceptable. Remember, I had to go to PALS to get immediate action. I had to do the same with my cousin. It is not right to put you both through all this anxiety and worry. Remember the squeaky wheel gets the oil!
I was sorry to read that Michael had a useless telephone consultation with his GP. When are they going to get back to being proper doctors? When Raymond was discharged from Hammersmith Hospital our GP did not get a copy of the discharge papers. When she came on her one and only visit a week after his discharge she had no paperwork. Luckily I had made a copy so I was able to give her that. Muddle is certainly the appropriate word to describe what is going on in the health service today. I hear nothing but tales of horror from friends, neighbours and relatives.
Raymond and I have carried on as normal since the semi-freedom on April 12th. The square in Exmouth and the seafront look very quiet, but today, sunny, even though cool, will probably bring in the crowds.
Like you, I get frustrated by the continual creation of new threads, but I do not think the forum is particularly easy to navigate for newcomers. I was dismayed to see Calling all Tns go down ten positions but luckily it is back up. It must have been the first thread for TNBC and I think it is a good idea to read as much of it as possible as there is a load of information. I also think it is useful to read through the All Topics section before posting. I started the UK TNBC thread because, as I have said, I thought we were in the Dark Ages and because our health system is different. I am very glad that it has gone international. In this country we need all the information we can get.
Raymond and I managed a quiet walk yesterday afternoon but it did rain on us!
That is all for today. Love and best wishes.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I do hope you manage to sort out your clothing. Remember, you cannot take it with you when you go and that there are only seven days in a week. Do you ever watch any of those programmes to do with hoarders? I watch them and I cannot believe that people can actually hang on to possessions to the point where they cannot walk through their rooms and cannot see or get access to their bed!
I was interested to read that you know the newer blood thinner by the brand name Eliquis. It seems to be the flavour of the month at the moment. I watched a programme entitled GPs behind closed doors, and I can now tell what a patient is going to be prescribed before the doctor even mentions it! It is an interesting programme if you can get it.
I think with the coronavirus vaccines, that there is a political and national war going on. There is also a lot of greed and profiteering. Raymond and I will have our second dose of AstraZeneca on April 28th at one of our local pharmacies. Those people that have been to the big vaccination centres here have been getting Pfizer. I think it was wrong to make people wait 12 weeks between vaccines and I now think it wrong that the powers that be are talking of mixing vaccines. I remember Chris Woollams saying that this should not be done. I think it is wrong to be labelling viruses by the name of countries. I listened to an expert talking about this during the past week and he was talking about them through numbers, according to what they had found. Going this way the so called Brazil and South African variant seem to be the same and the UK one very nasty but not the same as the other one.
I do agree with what you say about WOKE and that it is an attack on freedom of speech. I also agree that it is just another name for political correctness.
I have quite a few things to get through yet again so I shall close for now.
Please try to keep in touch. Take care and keep safe while waiting for this mad life to get back to some kind of normality. I do hope we shall solve the mystery or Marias and Hanieh one day but I have my doubts. I am now wondering what has happened to Jags56.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
No change here. I've put Michael on light duties until further notice! This means no gardening or house maintenance. I don't think he minds too much!
I do think that some of the problems in A&E arise simply because local health centres do not offer sufficient services. Michael saw several patients with cuts that needed cleaning and stitching, GPs or nurse practitioners could easily cope with this. Our local surgery applied for a Government grant to extend the building as they wanted to offer more services, minor procedures using local anaesthetic. This was turned down. Our GPs are frustrated as they are able and willing to expand services and this in turn would take some of the pressure off A&E. The Government appears to be more interested in running the NHS into the ground ready to sell it off to the chumocracy and pocket the proceeds.
Talking of Government corruption, Did you see Prime Minister's Questions on Wednesday? Starmer absolutely pilloried Johnson and not before time. If Starmer could just remember that he's in the sleazy infantile House of Commons, not the High Court from now on, Labour might have a fighting chance.
We really do need some new posters here. Many of the threads have been slow for months, I'm not sure why this is, particularly at a time when the pandemic has slowed health services and increased waiting times in so many parts of the world, not just the UK.
It's a lovely, sunny Spring day here and I really ought to begin preparing the garden for Summer bedding.
Best wishes for a peaceful and relaxing weekend.
Love,
Gill xxx
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Hello Gill,
Thank you for your post.
I think you are wise to put Michael on light duties and I do so hope that he will get an appointment soon to find out what is wrong.
I am really not sure what the answer is with A&E and GP services. I have watched many episodes of GPs behind closed doors where different surgeries are televised going about their daily routines with their patients. These surgeries do seem very busy and have lots of different GPs, Nurse Practitioners, even Paramedics, and a lot of Receptionists. It is always very busy and I do not know if I could cope with such a surgery, but they do all sorts of different things, such as minor surgeries under local anaesthetic and the doctors with different expertise can call on one another if necessary. I was quite surprised about the paramedics and how they will call a hospital asking for an ambulance and getting patients sent off if they feel it is necessary. The most interesting part for me is when the doctor explains a certain illness etc. This is very informative. Sometimes the patients are a pain because they do not want to meet the doctor halfway and give up smoking, drinking and losing weight, if it will help their health problems. A lot of the patients are very uninformed!
The surgery I go to in Exmouth has grown a bit, but it is still small. There is another larger one in the grounds of Exmouth Hospital, but it is too busy and overwhelming for my taste. There is also a pharmacy there. Exmouth Hospital has only about eight beds and is not really properly used. I have been there on a couple of occasions and I was impressed with the treatment. Parking is a real problem.
I think you are right about the NHS being run into the ground ready to be sold off.
I do love your word "chumocracy".
I did not get to see PMQs on Wednesday, but I did see extracts from it. I was glad to see that Keir Starmer pilloried Johnson. I think that Starmer still comes over as too Establishment and Labour is not doing well in the polls. I would not be surprised that those in control of the party try to get rid of him. The fact that creepy Mandelson is on the scene does not inspire me. I am off all politicians and I cannot stand all the rituals in the House of Commons and that other house which should not exist!!
I do feel that our thread is coming to an end and that it has served its usefulness. The whole forum seems to be dead. I often check the Active Topics and am surprised to find that lately it barely covers three pages and a lot of the posts there are the ones that are for switching off breast cancer. Some of them are very relaxing and I do like to look at those showing beautiful photographs. I think that Facebook, Twitter and probably Alexa have taken over. We shall have to see what happens when we finally get back to a more normal life and the coronavirus sinks into the background and gets dealt with like influenza.
At the moment we really are a small group, what I like to think of as friends. It seems to be you and me, Mary, Kath, Helenlouise and adagio when she feels up to it. We do get new posters but they do not stick around. I keep wondering what has happened to Jags56. They are having such a terrible time in India.
I did some gardening yesterday and I felt it did me a lot of good. It is so important to get out in the air. It is cold again here today but Raymond and I did go for a walk. His operated leg has been such a problem and yet the chest area no problem, he walks more slowly than he used to but must keep walking to help the slightly swollen ankle and foot where I think he has lymphoedema. I find it quite difficult to walk slowly as I am tall with very long legs and am used to taking long strides!
I do hope that one day, when everything is normal, that we shall be able to wave to you from at least the town square. We are avoiding the seafront because it attracts too many people.
If you want to switch off, please look at those old sit-coms, mainly from ITV on the Forces TV channel, Freeview 96, Sky 181, Freesat 165. My favourites are Citizen Smith and Home to Roost. The latter one stars John Thaw and he is hilarious.
Take care, Gill, and give our best wishes to Michael and tell him to take care.
Love.
Sylvia xxxx
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Hello Sylvia,
Very sunny weekend here and today is the same, still fairly cool though. Light duties and plenty of rest isn't working for Michael and he spent yesterday morning doing a village litter pick, in the afternoon he cleared out a blocked ditch. The stress caused by the usual malcontents in the village who contribute nothing to the community themselves but expect the Chair of the Parish Council to be at their beck and call, is something we could do without at the moment. Michael now has a Freedom of Information request to deal with which means going through all Parish records, written and electronic. I wish he'd just resign. The Diocesan Archive is a huge amount of work for volunteers and it seems that we are to be heavily involved in the Cathedral inventory. Too much is expected of volunteers, you probably feel the same.
I haven't caught up with the old tv sit-coms yet. They were gentler times for comedy and always left us smiling. I do think comedy has now become very dark and political. GPs behind closed doors sounds both interesting and frustrating. Why on earth do people smoke when it's so very damaging to health? GPs are banging their heads against a brick wall with a large proportion of the population as far as basic health advice is concerned.
I wonder if Raymond's swollen ankle has improved as much as it's going to? The surgery has obviously helped his heart and there always seems to be a pay-off. More aftercare may have helped, but seems to have virtually stopped. Covid shouldn't be the excuse for cutting services, but of course it's all very convenient for a Government determined to privatise the NHS and hand lucrative contracts to their chums and Tory donors. I have never seen such a sleazy bunch in charge of the UK before and there'll be a good many old school Tories who agree. I don't know how we can change this as the press is largely run by the far right.
I too wonder if the thread is still viable. New posters come and go but we really need a core of regular posters. I do hope it picks up in the next few weeks.
That's about all for now. I'm having my hair cut tomorrow and my second vaccination on Thursday so it looks like an exciting week ahead!
Take care of yourself and Raymond.
Love,
Gill xxx
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Hello Gill,
It is always nice to hear from you.
I do hope Michael will take it easy. I do understand what you mean about the malcontents in the village. During the twenty years that we have lived here we have experienced quite a bit of that. There are a lot of people who have all the answers but do nothing. One of my younger brothers who lives here in Exmouth and who has dedicated over forty years of his life to running the local Labour Party, called them the "Twhataadsas". He has now withdrawn from all this. The complainers should remember what President Kennedy said "Ask not what your country can do for you but what you can do for your country".
I do hope you will be able to catch up with the old TV sitcoms. Unfortunately, my favourite one, Citizen Smith, ended last Friday, but I am hoping that it will be repeated. I did like the main character, Wolfie Smith, and the way he used to shout "Power to the people!". I feel very disillusioned that there has been so little protest about the present government and yet today with all the headline news about football, people, mainly men, have turned out in droves.
I do agree that volunteers for anything seem to get taken advantage of.
I do think that this thread is coming to an end. I think after nearly eleven years that it may have said all there is to say. At the moment there are just five of us really, the two of us, Mary, Kath and Helenouise. I think patients have a lot of information about breast cancer in general and there are many ways of getting comfort and support through the social media.
I am just two months off sixteen years since diagnosis. I do have very mild lymphoedema in the right arm and neuropathy in both feet. These are definitely from my breast cancer treatment and most probably from the taxane drugs. I still do not take any thing for granted and often wonder what other problems may have developed in my body, especially heart problems from treatment, but I feel fine and keep very active.
Raymond is doing well and we just keep being active.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hi, Sylvia and Gill,
We had snow yesterday, what a shock to the system! Not just for us but for all the green and flowering things. I haven't looked too hard at anything, since there is not much I can do about it. There is a little snow still lying about since it got very cold overnight.
I have decided to go visit my brother in another state. I am just tired of being home, it has been 14 months and I am throwing caution to the winds and venturing off. Not that I have been a recluse, I just haven't traveled out-of-state in that time.
For months we have been nagged to get the vaccine, so we could get back to normal. Now that so many of us have the vaccine, we are nagged to keep masking, distancing, staying home and so forth. I am tired of the nanny state, I am tired of our autocratic government. We are being run by a group of, dare I say, malicious malcontents. My country is almost unrecognizable to many of us. There is my rant for the day.
Gill, I am glad to see that Michael is feeling up to picking up litter, and hope you can deal with all the paperwork that seems to have become your duty. Sylvia, I also have slightly swollen ankles sometimes, my acupuncture doc thinks it is a combo of circulation issues and neuropathy. He did say he is happy that my feet don't swell, thank goodness for small favors, I suppose.
I was struck by you quoting John F Kennedy, "Ask not what your country can do for you, ask what you can do for your country." Those words are like an echo from such a different time, now we have people demanding free housing, food, telephones, schooling, and all feel entitled. Uhoh, I'm heading for another rant, I better stop.
It is quite odd that the entire website is so much quieter, I know that people are still getting cancer. Very odd indeed.
There are so many people that came here and are missed now, we had several posters from the Philippines too. I suppose we must surmise many of them are trying to get back to normal life, and now like everyone else, are dealing with all the ramifications of the Coronavirus.
I have developed a new problem over the last year, the skin on my arms and legs has become paper-thin and dry, my dermatologist said it's because I had too much sun when younger. My acupuncture doc says he thinks it's that too, but combined with after-effects of chemotherapy. I tend to believe him, I really do believe I was overdosed on my first round of chemo, I laid in the hospital like a dead thing for over 5 days. After that my dose was reduced, and I coped with the rest of the regimen. So my arms up to the elbow, and my legs to the knees bruise easily, and the skin tears easily; it is very annoying.
On that note, I think I better stop for now. I hope we get some balmy weather soon, and the flowering things will be back to cheer us up!
Talk to you later, love, Mary
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Hello Mary,
Thank you for your post.
The weather seems to be up and down. Yesterday it was quite mild here, but today it is very cool.
I can understand how you want to visit your brother and I do hope you have an enjoyable time.
I think we are all fed up with all the information we are getting thrown at us about the coronavirus. Here we were at least told that having the vaccination would stop us from getting very ill and having to go into hospital. From the start of the virus it was quite obvious that everything from the government was about keeping people out of a hospital system that could not cope. It is a system that is underfunded, overused and abused. People focus on "free". It is not free, merely free at the source, and people expect too much of it. As far as the vaccine goes, it has been taken to mean that once we have had the two doses we are safe, but we are not. Of course there was no mention of the clots that we might suffer and it seems that is a risk with all of the vaccines. How rare it is only time will tell. There are risks of clots with the virus itself, so take your pick. I was reading about these clots, with reference to the J&J vaccine, and the thing it causes is "cerebral sinus thrombosis with thrombocytopenia". This is about clots in the veins that drain blood from the brain. It is accompanied by low levels of platelets, a type of cell that helps the blood to clot. It does not sound like a bundle of joy!
Raymond and I will be getting our second dose of the AstraZeneca vaccine next Wednesday afternoon. We are not looking forward to it as we worry about such things going into our body. I am concerned about the fact that Raymond has had triple bypass surgery and as a breast cancer survivor and feeling fine, I do often wonder what the treatment has done to my body over the years, even though I am aware of just the mild lymphoedema and neuropathy in the feet. Who knows what damage may have been done to our hearts with breast cancer treatment?
I think we are all fed up with autocratic government. Our present government is the worst I have known during my lifetime. I did not like the utter selfishness of the Thatcher government, but the present one has one corruption story after the other. I watched Prime Ministers Questions on Wednesday and thought it was a disgrace. The Speaker is useless and does not pick up on the Prime Minister when he is out of order. I do not think the Labour party is going anywhere, either. It has lost its white working class supporters.
As you say, your country is almost unrecognisable, and I say the same about this one.
It is true that the forum is very quiet but it could be that newly diagnosed patients have all the information they need to get through a cancer treatment. For company I think many are using Facebook.
As for our own thread, it is nothing like it was for so many years. I am sure more and more people are getting breast cancer of all kinds and more cancer in general. They are not getting the treatment, either. Today on the news, it was announced that there were 5,000 deaths from Alzheimer's, 5,000 deaths from coronary heart disease in March in this country, much more than from Covid. Very craftily they did not mention the deaths from cancer in general but just mentioned 2,000 deaths from lung and colon cancer.
I do read the Active topics on the forum and am always surprised that there are only three pages of them. A lot of the Active topics are ones to do with switching off cancer. Yesterday when I looked the thread Cats, Cats, Cats was number one, so I get the impression that people are looking for ways of switching off breast cancer and probably the coronavirus as well. I do like looking at some of the threads with lovely photographs of flowers etc.
I also get the impression that there are lots of patients with metastatic breast cancer. There is also, it seems, a lot of interest in the drug Trodelvy for MBC.
It has been a tiring day so far. I have spent too much time answering the telephone.
Stay in touch, Mary, and keep safe and well. Let us hope that we shall hear soon from adagio, Kath and Helenlouise. I do hope Gill will find the time to post, but I know that she and Michael have a lot on their minds.
Love and best wishes.
Sylvia xxxx
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