Calling all triple negative breast cancer patients in the UK
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Hello Debra,
Congratulations! Always good to hear from friends who are now so many years away from that terrifying day when they were first diagnosed. I'm only three years out and have metaplastic triple negative, so still keeping everything crossed. Like you, I relied heavily on Sylvia and the women here to show me that there's light at the end of that very long tunnel.
Wishing you a happy, healthy and peaceful 2022.
Love,
Gill X
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Hello Paula,
It was lovely to see your post and I wish you a very happy and healthy New Year 2022.
I was sorry to read that you have been having a tough time in the past two weeks. The deaths of those two young women is truly tragic. It seems that we keep getting nothing but bad news and it has seemed especially bad since the coronavirus started plaguing us. Your son must be going through a lot of stress with the shortage of nursing staff. We have the same problem here in the UK with shortages of nurses, doctors, carers and many other essential workers. We have to keep telling ourselves that things will get better.
I was wondering about melatonin and what you meant when you said about using it as a preventative. Do you mean as a preventative against cancer? My own information about melatonin is as follows. "Melatonin is a hormone secreted by the pineal gland in the brain that is thought to play a part in controlling daily body rhythms and regulating the sleep-wake cycle. Levels of melatonin rise in response to decreasing light, preparing the body for sleep. It may be prescribed for the short teerm treatment of insomnia in those over 55".
I do remember reading about how important it was to sleep in a completely darkened room so that melatonin forms. I also read that night workers were prone to developing cancer. I do try to keep up with the news, especially about health and breast cancer, but I have not heard much about melatonin lately.
I do know that melatonin supplements are easily available but I do not know if they are any good as an immune booster.
The only supplements that I have taken as immune boosters are astragalus and pycnogenol. I actually took them before I started my breast cancer treatment back in 2005 and also during my treatment. Over the years I have taken these on and off and lately I have been wondering whether to take them because of the threat of Covid. They are rather expensive here so I have not yet taken any recently.
What are you hoping for exactly in the way of progress for TNBC?
I believe in keeping to a healthy lifestyle, that is eating healthily, keeping physically and mentally active, avoiding stress and taking one day at a time. I still take nothing for granted with my 16+ survival years.
Keep well Paula and live one day at a time.
Love and best wishes.
Sylvia xxxx
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Hello Debra,
I have just read your very inspiring post and just wanted to wish you a happy and healthy New Year. Congratulations on your 10 years survivorship.
I shall write more later today.
Love and best wishes.
Sylvia xxxx
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Hello Debra,
I was wondering what you think has helped the most with your 10 year survivorship? I am a great believer in healthy eating and I keep to the Rainbow/Mediterranean diet. I know you also attach great importance to your diet. I do believe you are what you eat and I am very concerned about all the obese people that we have, not to mention children with obesity problems. There is far too much over-processed 'food' in the Western diet.
Thank you for your kind words about me.
I was interested about your mention of the person with the name Noni Jones. It is wonderful to hear about someone surviving 28+ years. I did try to locate her on the Forum but nothing came up.
I was so glad that you mentioned Titan and I do wonder from time to time what has happened to her. She certainly inspired me to start this thread and it would be so nice if she could pop in to say hello or if someone could give us news about her. The more survivors popping in the more encouragement it is for all of us, but especially those going through the shock of diagnosis or going through treatment with unpleasant side effects. They need to know that they can get through their treatment, that they can be helped and encouraged, and that they can complete their journey.
I do hope that you manage to catch up on all the posts and that you will share your thoughts about them with us.
How have you been coping with the coronavirus?
Please share any ideas you have about breast cancer with us. I think there is a great need of encouragement to be given to people being diagnosed with breast cancer in these Covid-19 times when cancer patients have been falling behind in the queue. Cancer is a disease that must be treated quickly.
Have you read any recent books about breast cancer and especially breast cancer with triple negative tumour receptors? There is so much frightening information about it. As I have said many times, I have always been positive about being negative.
Sending you love and best wishes.
Sylvia xxxx
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Hi Sylvia, Gill and et al.
I have friend whose doctor gave her a list of supplements to help boost her immunity and melatonin was on the list. I had only heard of it as something to aid in sleep. But what I meant as preventative I should of clarified as a preventative to protect against viruses. I really don't take any supplements, I do try to include naturally fermented foods in my diet. I like to add elderberry juice to my smoothies. I was wondering and maybe I've asked you this before but what are your thoughts on buying only organic foods. I try to buy everything organic but then I hear mutterings that everything may not be as organic as it is labeled.
I'm just shocked that if you are having a heart attack they are asking that you drive yourself to the hospital, they was a article in our Sundays newspaper about the number of death occurring for other non Covid conditions that folks were not able to get the medical treatment they needed. Which is why they wanted everyone to get vaccinated. Extremely weary of all the fighting and at this point those of us that are vaccinated will probably end up getting Covid, but hopefully won't be the cause of too much strain on the healthcare system.
As far as TNBC I just wish there was more news about anything that research is proving to help with the treatment. I guess understandably COVID is all that is making the headlines, but that doesn't mean progress has stopped
Paula
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Hi Paula,
I hadn't realised that melatonin helped to boost immunity, makes sense though, as I do know that people who fail to get sufficient hours of quality sleep on a regular basis have been found to have impaired immune systems. Melatonin is often prescribed by doctors to help with insomnia. Perhaps this is why melatonin supplements were suggested by your friend's doctor. Apparently working night shifts for long periods has a negative impact on the immune system, so logically, melatonin might well help to protect against viruses - but so does getting the right amount of uninterrupted sleep.
I too have heard that some organic food isn't as organic as it's supposed to be. I often wonder about farm shops. People in the UK seem to think that these places sell healthier 'cleaner' food than supermarkets. I would like to see some random testing of both farm shop organic foods and foods supplied in the organic aisles of supermarkets. Maybe I'm just getting old and cynical!
The most recent Covid data does seem to point to Omicron becoming endemic, so we'll probably all end up being infected in the next few months. At least the vaccinations saved most of us from the Delta variant, I certainly wouldn't have wanted a dose of that. Hopefully, our immune system will learn to cope with Omicron before long and our hospitals can return to normal. In England, 'normal' will still mean long waiting lists, but at least they'll begin to move in the right direction.
Take care.
Love,
Gill X
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Hello Paula,
Thank you for your post. I am not sure about organic foods, but I do buy some when they are available, but do wonder about them and the extra money you have to pay to buy them. I do buy organic carrots, organic cucumber, and especially organic celery. They do often seem fresher, but I do not get obsessed about organic foods. I think it is important to get a really good mixture of fruit and vegetables, especially those with deep bright colours. With the organic fruit and vegetables, I have noticed that they are often smaller than the non-organic, because they are supposed not to have been exposed to all the fertilisers.
I was interested to know that you try to include fermented foods in your diet. I do regular shopping at a small natural food shop here in Exmouth and from time to time I buy sauerkraut, but find it a bit too potent but have tried Golden Glow sauerkraut which has added ginger and curry. It is good with salads and cooked meals. I also buy tempeh, cut it into small pieces and do it in a stirfry. Raymond and I also like blue cheeses which are of course fermented. Since we avoid all dairy products we buy mainly a little goats cheese, but our firm favourite is Roquefort, a famous French cheese and made from ewes' milk. We do not overdo it because we are wary of animal foods. There is also fermented tofu, of course, but we are not keen on that. We eat plenty of yoghurt, but again we eat only yoghurt made from soy. We eat plenty of raw nuts, especially organic almonds which are softer than the non-organic.
I think that a varied healthy diet is more important than supplements. They are foreign to the body and full of fillers.
As for Covid, I think we are all fed up with it and want to get back to a more normal life. We shall have to see whether we get another variant. I am not keen to have yet another booster.
Our NHS is on its knees and needs complete reform. It is too big and has too many bureaucrats. The latest news is that the government is going to use the private sector to deal with the crisis. I am wondering if that is the road to complete privatisation.
With reference to TNBC, judging from some of the posts on the forum, additional drugs are being added to the chemotherapy treatment of some patients. The standard used to be AC and then T. In full that means in generic terms, doxorubicin, cyclophosphamide and then paclitaxel or docetaxel.
A = Adriamycin, C = Cytoxan, T = a taxane drug and stands for Taxol or Taxotere. These are brand names. From my own experience these three drugs were enough to deal with and back in 2005 docetaxel and paclitaxel were relatively new.
You probably know all this, but it is good for new people viewing to have all this explained.
I had epirubicin (Ellence) instead of doxorubicin although they are basically the same, but my oncologist told me epirubicin was less harmful on the heart. I had cyclophosphamide but docetaxel instead of paclitaxel. I did develop neuropathy, mainly in the feet, and my oncologist told me that the neuropathy had been caused by the docetaxel.
I feel strongly that patients should be told about side effects before they consent to their treatment. My information is that there is no cure for neuropathy and no cure for lymphoedema, another common side effect from surgery.
The other drugs I see mentioned now are carboplatin (Paraplatin), pembrolizumab (Keytruda) and capecitabine (Xeloda).
It would be useful to have some posts on this thread from patients having these added drugs to their treatment. I feel that it is so important to get a diagnosis as quickly as possible in order to try to avoid prolonged treatment. I feel that surgery is the most important part of cancer treatment and to have it as early as possible when the tumour is small.
It is a really miserable day here again in Exmouth. Will the rain ever stop?
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I think that you may have missed my post on the 7th.
The latest Johnson scandal is headline news everywhere. I think the real scandal is the NHS, crumbling hospitals, the loss of experienced medical staff who have been worked into the ground, failure to train sufficient doctors and nurses for the future and the growing waiting lists. Why aren't the public up in arms about this?
I've had a quick look at Chris Woollams' latest newsletter. It's a bit repetitive this time. There's more information regarding the relationship between some statins, including Atorvastatin, which I've taken for many years, and dementia. This is worrying to say the least. Also, I've recently discovered that studies concerning high cholesterol and the risk of developing Alzheimer's or vascular dementia have mixed findings. I think the whole cholesterol/statins issue needs an urgent review.
It's a bright sunny day here after a sharp frost overnight.
Enjoy your week.
Love,
Gill xxx
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Hello Gill,
I have looked back to January 7th to find your email to me. I did not realise that I had not answered it. I do not know any more what to think about Omicron. Today the Health Secretary has said that he thinks the situation with Omicron is improving, but that it will take two more weeks to get it under control as far as the hospitalisations are concerned. He has also announced that he has reduced the isolation period, after a positive Covid test from 7 days to 5 days. I am so disillusioned with the present government that I do not really listen to them any more.
I think we should now concentrate on all the lack of care that other ill patients have been suffering, and top of the list I put cancer patients. The NHS waiting list is now over six million. How on earth can they catch up on that?
I did pick up on what you posted about the Guardian on January 5th and the new cancer detecting blood test which will enable people with non-specific symptoms to be diagnosed early and that they will be using it on 2,000 to 3,000 people. I do wonder what exactly they will be looking for in the blood. I would need a lot more details. I remember that recently a woman who was running a business about cancer blood tests was given a jail sentence for fraud. As you say, we need more staff of every description to deal with all these patients we are going to have.
It is true that we are not getting many posts at the moment, but those that we do have a high quality ones and not just one-liners.
I think we need to talk a lot about healthy eating and healthy lifestyle. I think people's diets are getting worse and there are too many processed dishes.
I shall write more later on in answer to your more recent post.
Take care, Gill.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your post dated January 12th.
It is certainly true that Boris Johnson is headline news everywhere. I watched PMQs yesterday and I was so angry about his insincere excuse of an apology. Never once did he say he was sorry and he should have said it and he should have resigned on the spot. On the whole the Tory lot showed lack of courage and dignity. We now have the farcical parrot-like refrain of 'waiting for Sue Grey'. How independent will she be? We have a litany of unacceptable behaviour going back a long way, including the unbelievable amount of £112,000 spent on renovations to what is a work apartment at 10 Downing Street. There are also expensive holidays abroad. This from a man who would not give extra money to frontline hospital workers and would not restore a pittance of benefits to poor people. It makes you sick. I thought Keir Starmer was OK, but he lacks the punch of Angela Rayner.
Like you, I am asking why is the public not up in arms about this? Will everything be kicked into the long grass and get buried beneath the scandal of one Andrew Windsor? Suddenly there is breaking news from the Secret Service about a Chinese woman, whose name I cannot remember, who is stalking parliamentarians and trying to interfere with Parliament.
I have not looked at the latest newsletter from Chris Woollams. I do believe that it is important to get as much information out as possible about statins and dementia. Let us hope we get some posts about it. The medical profession seems to be trying to everybody on it. It is the new fluoride, they will be putting statins in the water next! Our bodies, and especially our brains need cholesterol. The more I read the more I have the impression that orthodox medication is all about blocking natural processes in the body and with one medication counteracting the effect of another!
That is about all for now. It has been a busy day. I do hope our group of friends will join us soon to let us know how they are, with all the strange things going on in the coronavirus world.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I'm writing this whilst sitting up in bed with a box of tissues by my side feeling sorry for myself. I have many of the symptoms of Omicron, so I have a PCR test arriving in the post today. I'm sure it's just a common Winter cold, but thought I'd better check. Feel dreadful, but it will pass.
The Prime Minister must be grateful to Andrew for taking the spotlight off him for a while. The growing waiting list for cancer diagnosis, surgery, treatment remains an afterthought in the daily news. That needs to change. Cancer and heart disease were huge problems in the UK long before Covid struck. If the NHS is to survive, then we have to accept higher taxation and a complete restructuring of the increasingly top heavy management. We also need to take responsibility for our own health - starting with diet. Alcohol is also a major problem here. From my own experience, too many retired people seem to think that wine is a 'safe' drink and regularly have a glass with their evening meal and another glass while relaxing afterwards. We don't help ourselves, despite knowing the consequences.
I wonder if Mary will call in soon. The reports on rising Covid infections and hospitalisations in America are extremely worrying. I hope she's safe where she is. Apparently there's still a lot of Delta over there.
I was reading some of the other threads here and it seems that many women in America are having out-patient mastectomies. They are taught how to manage their drains and sent home a few hours after surgery. Far fewer patients have drains here and mastectomy is only a superficial operation - traumatic for reasons other than physical ones perhaps. I wonder if hospitals in the UK are offering these day surgeries for breast cancer? I'm becoming very out of touch with what's happening here. Perhaps someone with more recent experience would call in?
That's all for now.
Enjoy your weekend.
Love,
Gill xxx
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Hello Gill,
Thank you for your post dated January 14th. I was sorry to read that you were not feeling so good and I do hope that you had good news from your PCR test. Apparently there are a lot of nasty colds and flues going around. Take care of yourself. We are probably having higher cases of these ailments because people are mixing together a lot.
I do agree with you about the Prime Minister. He is a slippery eel and not to be trusted. I do hope that Sue Grey does not let him off the hook, but I fear she will. She is hardly 'independent'. It is strange that so many things are happening and they are probably deliberate as diversion tactics. Apart from Andrew, we have been absolutely soaked with news about the tennis player, not to mention the sudden front page news about the Chinese woman who, so we are told by MI5, is a Chinese spy. This has been known for years but now is great news! I think apart from trying to bury all the party scandals, the Tories are trying to blacken the name of the Labour Party because they have taken a lead in the polls. I do wonder what Barry Gardiner did with £600,000 that the so-called spy gave to him. Ed Davey has also been implicated in all of this. You would have had to been born yesterday, as the saying goes, to believe that the Tories are as pure as the driven snow.
In the meantime, cancer diagnosis and treatment is not getting the attention and action that it needs. As you say, cancer and heart disease were huge problems in the UK before Covid struck, but it is being used for every failure that was long before it. We need a more serious Prime Minister than the present one. In fact, what I want most of all, is a General Election. I do not think it will happen as it seems our Tory MPs love power above everything else.
I do wonder what is going to happen with the NHS. It is too big and bureaucratic and we cannot keep pouring money into it if it keeps increasing the bureaucracy.
I also agree that people have to take more responsibility with their own health. Too many people cannot be bothered with this and will eat junk, stay as couch potatoes, drink too much alcohol and smoke, and be happy to swallow a pill as their answer for looking after themselves. I think too many repeat prescriptions are being issued as well. I do not have much hope for the NHS.
I do not know what is happening with Mary. She was such a strong poster. I do hope that it is not poor health that is keeping her off the thread.
I do know that women having mastectomies in the UK are not being kept in hospital as I was back in 2005. Some seem to stay in hospital overnight, released next day with their drains, and have visits from the District Nurse. We have to remember that breast cancer surgery is not considered major surgery, unlike hip replacements for example. I was told that back in 2005 and was told that a mastectomy took about 45 minutes and was mostly on the outside of the body. In 2005 I was in hospital for 5 days and not allowed out until my drains had completely cleared.
We need someone in the UK, going through treatment now, to post in and tell us what is going on with them. It would be useful if others, from different countries posted in as well, so that we could compare differences, if any.
One of my friends here with metastatic breast cancer to the bone, has had this for quite a number of years and is doing very well. Just last week, she had to have one of her check-ups, and it was a CT scan that was carried out in a mobile unit installed in the grounds of the hospital. She looks very well all the time, eats a good diet, keeps walking and is on and off mainly oral chemotherapy.
That is about all for today but I would just urge people to keep telling themselves the importance of diet, exercise, general life-style and rying to avoid too much stress. The answer to cancer and heart disease will not come in the form of a magic pill.
It is another cloudy day here, very depressing.
Please let us know how you are.
Love and best wishes.
Sylvia xxxx
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Dear Sylvia and Gill
I have tried to post a couple of time but ever time I submit it disappears. So let me know if you are seeing any of my posts.
I was just curouis about women being sent home a day after a mastectomy with district nurses following up with home visits. Is this part of the NHS or do you have to have private healthcare coverage? I have often thought the idea of having district nurses or neighborhood nurses would be a valuable asset to our healthcare. I'm not sure about going home the next day after such a surgery as a mastectomy that does seem much to soon. But perhaps staying in the hospital and getting sick is much more of a risk that going home to heal. It saddens me to think that the NHS is crumbling. Will people in the UK be able to buy private insurance is that what it will come to? Good healthcare should be available to everyone...
University of Kansas Healthcare sent me an email saying that my mammogram and ultrasound may be postponed due to the demand of care and the shortage of staff. They advised me to make sure my appointment is not postponed. I truly hope not, I still have pain in my armpit and breast almost 5 years latter that always sends my anxiety soaring wondering if it is just scar tissue. I have done alot more lifting, our daughter & son in law are staying with us until they can find a house to buy. In the US right now the housing market is crazy and I wonder how will anyone afford to buy a house. At any rate I have been picking up my 2 year old grandson using muscles that havent been used that much.
Hope all is well...
Paula
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Hello Sylvia,
My PCR test came back clear. The cold symptoms have almost gone, but I've had some dizzy spells yesterday and today. Michael has a dreadful cough. Altogether, not a good week so far.
Mastectomy is a very simple surgery with no major organs involved. However, I don't think anyone should be allowed home the same day as having a general anaesthetic if they are going to be on there own. District nurses are an endangered species here. I did have one a few days after being discharged following my sepsis with c difficile drama. However, that was only because I had pressure sores on my lower back.
The NHS, recruiting more staff, building more hospitals, opening specialist units etc is nowhere on the agenda and won't be until Johnson resigns and the bun fight of a leadership contest is over. There seems to be a feeling of helplessness amongst NHS staff at all levels. Much could be achieved in a short space of time if the Government paid off the massive debts caused by Private Financial Initiatives. Building hospitals and providing health services should never be about making the wealthy ever more wealthy. Nurses and healthcare workers should have had a pay rise, instead they got a badge!
The Norfolk and Norwich University Hospital has portable units for MRI scans. I had my spinal scan in one. It was pouring with rain on an icy day and, of course, the waiting area was in the building opposite. It was difficult for the technicians who had to collect the patient and escort him or her across to the scanning unit. It's been useful to have the extra capacity though and I suspect portable units will be used more and more as the population expands.
The weather has been bright and sunny here for a few days. We always wake up to a sharp frost, which is as it should be at this time of year. I have no option but to stay at home, so I'm following political developments with interest. So far, Operation Save Big Dog is meeting stiff opposition from members of the Pork Pie Plot and Operation Red Meat is soon to be revealed in all it's glory. Do you ever feel that you've just fallen down a rabbit hole and into a parallel universe?
Keep warm and try to find time just to relax.
Love,
Gill xxx
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Hello Paula,
The National Health Service is free to everyone here as long as they have UK citizenship. However, the NHS is crumbling, underfunded over many years, very short of doctors, nurses, radiography staff and so on. The general feeling is that the Conservative Party is determined to sell the NHS off to their friends who run private health companies. American companies will almost certainly be heavily involved. Some people already buy private health insurance here, but no one I know does and the vast majority of people wouldn't be able to afford it.
When I needed my mastectomy I paid to have the surgery in a private hospital. The surgeon was from the NHS hospital in the same city. I chose to pay as the NHS wait was too long for such an aggressive (metaplastic) cancer. I had my operation at 2pm and went home just after midday the following day. That's the norm here these days. Very few people are seen by a district nurse unless they are on their own and frail. I had no drains and was absolutely ready to go home. Perhaps I was lucky, but I had no pain or even minor discomfort ....... that was to come later with chemotherapy.
Push for your mammogram as you need some peace of mind. I too have pain under my arm and in the area of my mastectomy, in fact its been worse over the last few months than ever before. I'm worried but my General Practitioner's referral was ignored by the breast clinic and when I eventually got an appointment, it was via a telephone call! I was told that the type of pain I described was common even many years after surgery. I'm going to visit my General Practitioner in the near future to discuss.
Gill X
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Hello Sylvia, Gill and Paula,
Yes Paula I can see your post! And glad to hear you are COVID negative Gill.
I am cancer free thank goodness. The PET, ultra sound and some more X-rays showed fractures to three of my ribs. Hence the pain. Unfortunately it is osteonecrosis from the radiotherapy. I have been referred to a pain management specialist. So hopefully we can keep the pain at bay while the bones degrade. So off to my standard treatment today.
COVID is running rampant here with the local hospital in code brown (the code for disasters) which means no elective surgery and cancelling staff leave. We have lots of businesses shut and supply lines struggling because of staff shortages because people with COVID or a primary contact. They have changed isolation to one week if you are asymptomatic and work in an essential service.
I hope if I get it I don't cough. Only risk smiling at the moment, even laughing i a challenge! So no sneezing or coughing please.
Do hope you all remain well. Best wishes
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Hi Everyone
Great to see everyone has a happy healthy Christmas apologies for taking so long to post but as you know the omicron wave hit us very hard. Public health now can no longer contacT trace as we used to and the responses change daily.
It has been frantic here and we are slowly coming to terms with the fact that we have to live with Covid. Our aged care facilities have been hit hard particularly the ability to staff them with staff being diagnosed daily. We are working with the commonwealth to case manage outbreaks in ACFs to ensure they can maintain staffing levels. It is pleasing tho to see residents as yet don't seem adversely affected particularly if they have been triple vaccinated.
Boosters have now been recommended at the 3 month post vaccination to deal with the current out break however modelling is now showing we should reach our peak by mid Feb. Work is exhausting and some days it feels that life will never return to normal. PHUs are try to slowly go back to business as usual but some Covid drama always crops up! I have lots of links to current and future modelling for Covid if anyone is interested.
My daughter her husband and 4 children currently have Covid and are trying to isolate as best they can with 4 kids under 7
Stay safe and well everyone
Much love
Kath
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Hello Paula, Gill, Helenlouise and Kath,
Thank you very much for your interesting and informative posts. They are most appreciated.
I have not had time this week to respond to them and give them the attention they deserve. I shall try to reply over the next few days.
I was glad to read, Gill, that you did not have Covid. I watched PMQs and could not believe the behaviour of our Prime Minister. I think he should have been thrown out of parliament.
I shall write more later.
Love and best wishes to you all. Try to keep sane in a mad, mad world!
Sylvia xxxx
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Hello Helenlouise,
It's a great relief that you remain cancer free, but crumbling bones, especially ribs sounds very painful. I hope the pain clinic comes up with some ideas. Sneezing is definitely to be avoided, but perhaps you could learn to control laughter by only being around miserable people, frowning at small children and avoiding any event that looks like it might turn into a party. Just joking! Try learning some controlled breathing techniques for whenever you feel a laugh coming on. Good luck!
Here in England, Omicron infection levels are falling, though many people seem to have given up on testing, so we can't be sure that the stats are accurate. There were 900 deaths caused by Omicron in England and Wales during the first week in January. Two days ago there were 439 deaths in one day. Despite this, our King of the World Prime Minister has announced that all Covid restrictions are to be lifted on Thursday.
Good look with the pain management clinic, keep well.
Love,
Gill xxx
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Hi Kath,
Hope your daughter, son-in-law and grandchildren recover quickly with no longer term health problems. Boosters are still going on here and in my area there are very few people who have refused to be vaccinated. London has suffered greatly from the ridiculous propaganda of anti vaccine conspiracy theorists. The high infection/death rate amongst the unvaccinated is ignored or the facts twisted by these malcontents. I despair.
Keep up the good work, it must be exhausting and depressing that the outbreaks still continue and will do so for the foreseeable future. I hope that you're able to find time to relax and rebuild your energy levels.
Keep yourself safe.
Love,
Gill xxx
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Hello Paula,
I am very sorry for the delay in replying but I have had a lot to do.
As for your posts disappearing, this can happen if you write directly in the thread. I write it in Word and then copy and paste.
I am not too sure what is happening with our NHS now because everything is in such a muddle. When I was going through treatment the NHS District Nurse played a very important part. When I was going through chemotherapy she would come the day before my appointment at the hospital to take a blood test. This would be sent straight to the hospital, so that when I arrived I would be told immediately if there were any problems with the blood test. If there were the medical team would not proceed with my chemotherapy infusions for that week. Fortunately I was always fine and always had my chemotherapy infusions. During all of my treatment, if I had a problem with anything, the District Nurse would come to my home and check. I looked forward to when she came as she was always so friendly, lively and cheerful.
I think that, today, the District Nurses are overwhelmed and stressed and probably in very short supply. The daughter of one of my neighbours here is a District Nurse and I know she does not have a minute to spare. Everything seems to be done on the phone these days and I do not agree with telephone appointments.
I think if you have a District Nurse who comes daily to empty your drains after a mastectomy, you are in good hands. Remember mastectomies are not considered major surgery. I think you probably recover more quickly in a home setting.
I do hope that you manage to get your mammogram and ultrasound. It seems that there is a shortage of staff everywhere and a lot of demand. You will need to push to get your appointment.
If you have any kind of pain that worries you, you should mention it and get it checked. Worry and anxiety is no good for any of us.
Be careful not to overdo the lifting. You need always to be gentle and careful with your surgery arm.
All is as well as can be expected here. I think we are all fed up with the two years of Covid-19. I think the UK, especially England, where I am, is in a mess. Our government is not up to par and they do not seem to care. People are struggling and the cost of living is going up and up. As for housing, it is hopeless for young people. So many people are having to go to food banks and some are having to choose between heating and eating. The elite here could not care less.
That is all for now. Keep well and keep safe.
Love.
Sylvia xxxx
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Hello Gill,
I do hope you are feeling better today and the same goes for Michael. There seems to be a lot of really nasty colds around. We have probably all got very rundown with two years of Covid-19.
I really do not know where we are going with the NHS. The whole problem seems to be a huge shortage of medical staff of every kind. There are too many patients and too few staff, but too many politicians and too many bureaucrats! Whatever the present government says they do not really care about the NHS, have never cared about it and have not maintained it. They do not use it, except for publicity, and they never will care for it.
As you say, Boris Johnson is now completely consumed with saving his own skin. It is obvious he has been lying through his teeth and taken us all for fools. I just hope that Sue Gray does not come down on his side. Today Boris Johnson is having all the Tories at that big country house, owned by the taxpayers, to browbeat and threaten anyone who refuses to back him. On Any Answers this afternoon the callers were very angry. I do hope that he has to step down but I do not know who will replace him.
It is not saying much for the Tories. All it needs to get rid of Boris is for the people who were at that party to come forward and admit it and also the fact that they received the invitation by text or email. If not, they are gutless. You do not bring bottles of booze to a business meeting and you do not bring your wife. I thought that alcohol at work was a sack-able offence.
That is about all for now. I have been very busy over the past few days and the weather has been very depressing.
It would cheer me up if we could get rid of this over-staffed parliament. We do not need 650 overpaid politicians to run this country. I think we could halve that number. As for the Lords it should disappear. We need a modern country.
It is sad that there is still no sign of Mary or adagio.
Love and best wishes.
Sylvia xxxx
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Hello Helenlouise and Kath,
I was so glad to see you back on the thread. I am trying to catch up so I shall be answering your posts tomorrow.
Love and best wishes.
Sylvia xxxx
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Hello Helenlouise,
I was glad to read that you are cancer free. That must be a great relief.
I was sorry to read that the PET, ultrasound and some more x-rays showed that you have fractures to three of your ribs and that they are the cause of your pain. Cancer treatment that involves radiotherapy and chemotherapy is so damaging to the body and yet treatment seems to be more and more chemotherapy and more and more radiotherapy. It would be good if oncologists made it an aim to catch cancer at its earliest stages so that patients may be able just to have surgery. I get the impression that more and more drugs are being used and there is only so much that a body can tolerate. I do hope you will be able to get some very effective pain management that will not make you feel awful. I know that necrosis means the death of tissue cells. Is there any way that the ribs can repair themselves? You are such a brave woman to be going through all this. I hope you will not have to have any-more x-rays.
I do hope that the day is not far off when we can deal with Covid-19 just like a flu virus. I think it is all getting too wearing for all of us. The UK is in a mess with all this as well and I am not convinced we are being given the correct number of infections and certainly not the correct number of deaths. It is all manipulated and political so that the population is told whatever makes the politicians look good to us. I do not believe the number of deaths is 150,000 in the UK. I remember it was about 129,000 way back in the early days. I remember, also, that 3,000 deaths were deducted at one point. We shall never really know the truth. Yesterday there was mention of another variant, something like BA.2. Have you heard of this? I dread to think how the NHS will deal with all the probable deaths of other illnesses from cancer and heart disease etc.
Take care of yourself and try to get some time to yourself.
Love and best wishes.
Sylvia xxxx
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Hello Kath,
I shall have to catch up with you tomorrow as I have had another very busy day. It seems to be one problem after the other! Last night, one of the residents here had a mishap with her microwave. She put a bed warmer in it, did not time it, forgot about it and it burnt. There was an awful smell in the communal areas which os still persisting today. It made Raymond and me feel awful and kept us awake most of the night.
I shall write more tomorrow.
Love and best wishes.
Sylvia xxxx
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Hello Kath,
Thank you for your latest post. I do hope everything will ease up for you soon. Omicron has become so widespread that nothing much can be done. Fortunately we are told that it is not so serious as the delta variant. I think governments now announce whatever statistics put them in the best light. They are not mentioning the most recent variant which I heard named as AB.2.
Here in the UK it is all about making sure the NHS does not collapse and it has been like that from the very beginning. The NHS does not have enough staff. There aare about 100,000 vacancies and no hope of filling them.
I was sorry to read that your daughter, her husband and four children currently have Covid. I do hope they make a good recovery.
Take care.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I know how busy you are so please don't rush to post back. The weather here hasn't been too bad and the sun came out for a few hours this morning. Your weather seems to have been quite depressing, which does nothing to lift the spirits. Like you, I always feel a bit down during Winter. I feel much better when March finally arrives, no matter how windy or wet it might be. The lighter nights help, I think SAD affects many of us.
The political situation is so depressing. Omicron is by no means over and there were 346 deaths today, but all restrictions will end in England tomorrow no matter what. The hospitals will be unable to cope with the inevitable extra cases and once again cancer patients will see surgeries and treatments postponed. Breast cancer patients will be hit the hardest. Breast clinics were stretched to the limits in many NHS Trusts long before the pandemic. Now that the numbers of women with breast have risen to 1 in 7, we really need those specialist centres. The extra travel involved would be problematic for some, but it would be a better alternative for us than the neglect that's going on now. Despite letters to MPs, nothing happens. We should be planning cancer care for the future, instead we're always playing catch-up.
Prime Minister's Questions was an absolute disgrace today. A Labour and Cooperative MP called Johnson a liar to his face. The Speaker had to ask him to withdraw his comment, but Hoyle often doesn't bother these days. I strongly believe that Sue Grey handed over her report last night as planned. You can bet that it's on a desk somewhere in Downing Street being redacted. Johnson's now has to wait for the Tippex to dry before handing it over. Has our democracy ever looked so fragile? The NHS has been forgotten and even the Health Secretary looks heartily sick of having to cover up.
I was pleased that helenlouise has been given the all clear for cancer. Even so, her ribs are causing her a lot of pain and she deserves better after all she's been through. I think Mary will drop in before too long, but we haven't heard from adagio for months and it would be reassuring to know that she's fit and well.
Sylvia, don't work so hard for others that you have no time for yourself. It's perfectly reasonable to be selfish sometimes you know! I'm learning to say no to people, I feel guilty for a while afterwards, but I think it's the only way.
Love to both you and Raymond,
Gill xxx
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Hi Sylvia, Gill, Helen, Kath, Paula and all,
It's snowing here again, but not as cold as it has been. In fact, next week will see a big warm-up before we plunge into the teens again.
Here Covid is still causing troubles too. Last week I had a massage with the same lady I have been going to for years. She got in touch the next day and said she was ill and tested Positive for Covid. Yesterday, a week later, she was having an urgent visit with a cardiologist because of heart problems. I took 2 tests, and was Negative on both. As far as I know, her main physical concern is being very overweight.
I did keep myself to myself until I tested Negative, and it was so cold that my old farmhouse developed frozen pipes. My fault since I didn't take proper precautions. So I was kept busy traveling back and forth with heaters and hair dryers. I finally had success when the weather warmed a little, small victories!
Did you hear about the new BC talking point is doing watchful waiting in cases of DCIS instead of the more aggressive way these cases are sometimes handled? I'm not sure what I think about that, I know several ladies who had this diagnosis, and they all wanted surgery immediately to remove the tumor, most of them are in their 40s and also wanted mastectomy and reconstruction. My daughter-in-law is in this group, she has finished her second reconstruction because her first implants were problematic. Reconstruction is no picnic, there is no way to recuperate without help.
Sylvia and Gill, I see that your UK PM is going to relax Covid regulations, I wonder if this will last? Here the Vaccines are still being pushed aggressively by the President and his people, and helpful treatments are becoming harder to get. It is becoming more and more obvious that the vaccines don't work as promised, they are not a miracle drug. Hopefully they are still causing some benefit to those of us who have had them.
For Helen, I am so glad for you that you are cancer-clear, and I'm sorry about your bone density. You are certainly one tough lady, you have been through so much, and always write in such a positive way.
Kath, you sound as busy as ever, I don't know what your patients would do without you!
Paula is a few hours drive to the North of me, and usually gets the cold fronts before they get to me, I do think of you, Paula, when these events happen! I hope your son is doing well.I'm off for now, I think today I will try to get finished taking down Christmas décor, to me it's easier going up than taking down, and my little dog will probably be no help.
I think of you all so often, love, Mary
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Hi Mary,
In my neck of the woods, the weather has been better than average for January. No snow at all and it's so long since we had proper, crisp, deep white snow that I've forgotten what it's like. I miss it. The upside of warmer Winters is that the pipes don't freeze. I had frozen pipes when we lived in Devon (not too far from Sylvia) and I went around trying to thaw them with a hair dryer. This resulted in one fractured pipe and a very annoying husband. It's not a good idea apparently
Where I am, almost everyone has had three Covid vaccinations which has meant fewer serious illnesses and deaths. What worries me though, it that people who had Omicron quite recently are being reinfected. Maybe the tests are oversensitive and need to be delayed for a few weeks after someone has fully recovered. Sounds like you had a lucky escape, but it's inevitable that we'll be infected at some point.
Our county is a complete mess, democracy is disappearing and Parliament sidelined. The Conservative Party needs to get rid of Boris Johnson quickly, he's turning out to be a despot. Of course, I'm extremely concerned about what's happening to our NHS.
Watchful waiting in cases of DCIS is often suggested by breast surgeons here. For me, not having surgery would feel like having a ticking time bomb in my chest. I would be asking for a lumpectomy with regular follow ups.
Hope the dog 'helped' you to take down the Christmas decorations. Neither of the cats were interested in the Christmas tree this year, but both seemed to enjoy sleeping under it when the lights were on.
Stay well and try to keep warm.
Love,
Gill xxx
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Hello Gill and Mary,
It was nice to see the two of you corresponding with each other on the thread.
I have nothing much to add at the moment. The situation in the UK with a farcical government is really getting on my nerves. I think Boris Johnson should be made to step down. He does not have the dignity or seriousness to be in charge of our country in such difficult times. We, the people, are being treated with contempt.
It looks as though we are now dealing with another variant of the coronavirus, AB2. I first heard it mentioned some weeks ago and that it was in India. More recently it has appeared in the UK.
I feel so sorry for all the cancer patients, heart patients and many others that are being sacrificed.
I feel very tired this evening and am just going to make a simple meal for Raymond and me and then try to get an early night.
Sending love and best wishes to you all.
Sylvia xxxx
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