Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Sylvia,
Hope all is well down in Exmouth despite the grim Autumn weather. The afternoons get shorter and darker every day. I usually draw the curtains and switch the lights on soon after 3pm, just to shut it out.
As predicted, I now have my NHS 'extremely vulnerable' patient letter to add to my collection. I'll have to sort it out when I have time. What a complete waste of taxpayers money. My daughter had dozens of patients with letters asking them to shield when they didn't need to and vice versa during the first lockdown. She didn't appreciate wasting valuable time sorting out the Government's mess.
The drive-through Covid testing centre in Norwich had to be closed down yesterday, when several staff tested positive. G4S run it! When will the Government stop handing out contracts to this company? Outsourcing doesn't work. All part of the Tory chumocracy I suppose. Some people are getting very rich on the back of this pandemic.
You will no doubt have read about the Moderna vaccine. This is nearly 95% effective and much cheaper than the one produced by Pfizer. It won't mean the end of coronavirus, but it might mean that hospitals will be able to start treating cancer patients within the set NICE time limit again. Heaven knows how the backlog is going to be cleared. Private hospitals appear to be filling the gaps for those patients who are able to pay or persuade their hospital to transfer care from the NHS to the private sector at a cost to the NHS. It does seem that there might be light at the end of the tunnel - let's hope.
Like you, I find Professor Van Tam the most reliable and sensible of the public health advisors. He doesn't seem to be as easily influenced by Johnson's briefing expectations as either Whitty or Vallance. Jenny Harries followed the Government line to the letter and wasn't worth listening to. I rarely bother with the briefings now, particularly if given by Matthew Hancock. He constantly exaggerates, flips the facts and contradicts himself. Most of the track and trace success stories are simply made up. The system that will be super efficient is always in the pipeline, but never actually materialises.
Again, there is very little breast cancer news to report on. Breast cancer awareness month came and went and lots of money will have been raised. However, amongst the many stories about women who were 'battling or had' battled' breast cancer, there appeared to be very little about the wide range of different types of breast tumour. The experiences and expectations of women with an oestrogen+ cancer may be very different from those of women with triple negative, HER2+, metaplastic, inflammatory and so on. Oestrogen+, being the most common, is naturally the main focus but it shouldn't be the only focus. Apparently some women with metastatic breast cancer feel particularly sidelined by the annual pink washing of this incurable disease. If the organisers of breast awareness month could steer clear of the 'celebrities with breast cancer' approach and concentrate more on the realities and the science it would be a step in the right direction.
I think the weather, Covid and the lockdown is beginning to affect my temper. I'm becoming crosser by the day. Perhaps someone has some nice uplifting stories to post?
Take care Sylvia.
Love,
Gill xxx
0 -
Hello Everyone-
Thank you all for responding to my post awhile ago! I do hope Adagio's valve replacement goes smoothly. My son first worked in the cardiac unit when he became a nurse and has taken care of a lot of patients with aortic valve replacement and mitral valve replacement. My brother-in-law had an aortic valve replacement a little over a year ago and he is not in very good health, he has diabetes and congestive heart failure but they did the procedure and he came thru with flying colors! No complications and recovered well from it.
I’m still hoping that Marias is ok. Her last message was very concerning. I loved seeing Kath's photos, it is just nice to see a face to a name. And smiling.
I had my breast ultrasound this morning to check out that area by by scar tissue and they said that there was no change and that fat necrosis is fairly common and nothing to worry about. It did make me feel more at ease.
People are still getting very sick here in the US, my son is working hard to staff the clinics and hospital with critical care nurses. I think if more could see that masking and staying away from groups of people is not just about themselves getting sick but the toll it takes on the whole healthcare system. Oh well I have scratched my head many times over this situation trying to figure out what people are thinking.
We have bright sunshine today, but I do know what Gill means by the days getting shorter. I still continue to get and and walk with my dogs even if I run out of daylight!
Hoping all are well!
Paula
0 -
Hi Paula,
Good news from your breast ultrasound. Hope this brings you some peace of mind.
I'm sure that adagio will be reassured by your comments regarding valve replacement surgery. Unlike your brother-in-law, adagio is fit and healthy, though I know she's concerned about how radiation might impact on her wound healing and that her osteoporosis might be a problem when it comes to her sternum. I seem to remember that adagio was a nurse before she retired and recalls patients not making it through heart surgery. I think all of us have a tendency to remember when things have gone wrong even when these cases are the exception. The fact that valve surgery is now routine and serious complications are uncommon is something to keep at the forefront of her mind. Much easier said than done! Everyone here will be rooting for adagio and wanting to help her through this very anxious time.
The UK has been very badly hit by Covid. Despite a rise in deaths and a surge in infection rates, far too many people are ignoring the rules about social distancing and wearing masks. It's just so selfish and as you point out, their behaviour impacts on the healthcare system. Your son who's working so hard to keep critical care units staffed must be in despair, or more likely, very angry.
Enjoy the rest of your week.
Keep safe and well.
Gill xxx
0 -
Hello everyone,
I want to thank each and everyone of you for your very kind, helpful and sympathetic responses to my current dilemma - the level of concern expressed has brought me to tears and I am so grateful for this online community of friends who are willing to support, encourage and help.
I am still hanging in here - have reached out to my new assigned surgeon 2 times already with no response so far. My next step is to call my cardiologist and ask what is going on?
I do not know if I had rheumatic fever as a child and since my aortic valve is so narrowed, they can not tell if it is biscupid or tricuspid. Fortunately, the last 3 nights I have had a good sleep - without chest noises - and my mood is improved. I am less afraid than I was last time I posted and I am grateful for the time to continue researching and getting different perspectives on my unusual situation.
Thanks to you Sylvia for talking to your friend and for suggestions of detailed and direct questions to ask the doctor - and for the diagrams of the heart valves. I am aware that I have to be my own advocate. But some days it seems so overwhelming. Of course, the whole covid panic is an extra barrier.
Stay well everyone and I will let you all know as soon as I hear from somebody. Thanks so much
0 -
Hello Gill,
I just wanted to say that I have read your most interesting post and that I shall answer later today. It is early morning here and I have quite a few things to do today, but I shall definitely settle down at some point and respond.
Hello Paula,
It is so good to have you posting and I read your post with interest. Your son is doing such a worthwhile job. I shall write more later today.
Hello adagio,
I was so glad to see that you had posted. I shall write more later on but I was glad to read that you are not so afraid and that you have slept better. Keep pushing to get your surgery. I can get all sorts of information from my friend at the hospital in London and so focus on the fact that she tells me these surgeries are all routine these days and that normally surgeons do both aortic and mitral valves. She was a great help when Raymond was in hospital. I also have people where I live and neighbours who have had these surgeries.
I shall talk more later.
Love to you all from gloomy Exmouth.
Sylvia xxxx
0 -
Hello Gill,
It is nearly 5 pm and I have just managed to sit down to answer the posts. It has been one thing after the other today!
I can understand your frustration about the "extremely vulnerable". patient letter. I do wonder how much money is being wasted in the NHS with all these unnecessary letters. I think the NHS has got too big and is disconnected. I do not like the fact that there are no signatures on any of these letters. It is not right either that doctors are having to sort out the government's mess. They trained to practice medicine. I spent quite a lot of time yesterday speaking to someone in cardiology to try to get it through to them that Raymond will not be coming to the hospital to have his pacemaker sorted out and that we did not want to keep receiving letters. The person I spoke to was very pleasant and answered all my questions but I do wonder what is going on. The person said that I would have noticed that things had changed with the latest letter because they had gone 'paperless' because the letter was on paper! However, the usual four or five pages accompanying it explaining all the do's and don'ts were not there.
Apparently there is a new system, so a friend told me, about dealing with paperwork, called Your Care. It is some kind of machine with information on it about patients. My friend said it was more like No Care. She told me that her latest medical records were full of mistakes and incorrect information, that she had had a very bad experience during two stays in hospital and that she would undertake litigation when she felt better. She used to be a nurse and was a theatre nurse. She told me that she thought the NHS was finished. I think we are going to be taken over by American companies.
I do agree with you about outsourcing not working. I do love your word Tory chumocracy. It describes the setup perfectly.
I have a good word for you that I got from the section Dictionary Corner by Susie Dent in the Radio Times – word of the week: bafflegab. In 1952 The Daily Telegraph announced a new word "for lovers of officialese" – bafflegab, and is defined as "Multiloquence characterised by a consummate interfusion of circumlocution and other familiar manifestations of abstruse expatiation commonly utilised for promulgations implementing procrustean determinations by governmental bodies" – so bafflegab is verbiage that confuses more than it clarifies.
Its two elements are: baffle as in perplexed and gab as in chatter or prattling (that flows from the related word gob). Bafflegab can be applied to jargon, political obfuscation or even the instructions on flatpack furniture.
We could say that the Tory chumocracy when they open their 'gobs' fill us up with bafflegab!
I think there has been too much coverage of the coronavirus vaccines and people given too much hope. It could be some time before any of these come to fruition. I am glad that Professor Jonathon Van Tam is there to bring the government down to earth and get rid of all that jam tomorrow that we are getting from the government.
Like you, I remain very concerned about cancer patients and for breast cancer patients in particular. It could be that in the long run we shall have more deaths from cancers of all types than from coronavirus.
I do agree with all that you said about breast cancer. There needs to be much more emphasis on getting patients through this ordeal at the moment and not keep going on about medication that might come about in the future.
I think we would all agree that Covid, the lock-down and the weather is getting to us. It is very hard to get motivated.
I shall have to end now but I shall get back to the thread later.
If you can, try to have a look at the Great Plague: Decimation 2 of 3. it started on Tuesday on Channel 5 and the title on Tuesday was The Great Plague: Outbreak. This one was all about the spread of the 1665 Pandemic week by week. It is presented by Dr Xand van Tulleken and also has John Sergant in it. It is on at 9 pm. It says the doctor returns St Barts Hospital to look back at the historical records which show how the nursing staff stayed behind and risked their lives in order to help the sick.
Love and best wishes.
Sylvia xxxx
0 -
Hello Sylvia,
Thank you for crediting me with 'chumocracy'. Alas it came straight from a comment in the Guardian. It describes this bunch of Eton chancers perfectly.
I'll write more later in the week.
Love,
Gill xxx
0 -
Hello Paula,
Thank you for your latest post.
I am sure that information about your son and how he first worked in the cardiac unit and took care of a lot of patients with aortic and mitral valve replacement will be very encouraging to adagio. I am sure, as well, that the fact that your bother-in-law had aortic valve replacement surgery and is not in very good health, but has survived it all will also be encouraging.
Like you, we are all hoping and waiting for Marias to reappear on the thread. Her last message really worried me. I am sure that, if she can, she will suddenly reapper out of the blue.
I was glad to read that you had good news from your breast ultrasound. It is very important to have concerns removed and to have some peace of mind.
People are still getting diagnosed with the coronavirus here and we are still having deaths. I think that probably lots of people are obeying the rules and regulations, but there are obviously many who are not. Some of those not obeying may not even realise what they are doing. There are too many exceptions to the rule and it is complicated by the fact that the UK is made up of England, Scotland, Wales and Northern Ireland. These four parts are all doing different things at different times, so it is quite a muddle. I have no doubt, however, that the worst part for pussyfooting around is England. Our government tries to lord it over Scotland, Wales and Northern Ireland and does not treat the others as equals. We need a devolved English parliament and a federal government that melds it all together.
The emphasis is now all about Christmas and relaxing everything for that. This would be catastrophic as we keep going in and out of lock-down, which is not really lock-down, and any relaxation of the rules will send the cases and deaths up. Christmas is supposed to be a religious festival and not one for over-eating and over-drinking.
You are very lucky to be getting some bright sunshine. It is very much lacking here and am sure people need to be taking vitamin D capsules.
That is about all for now. Why not tell us a little about your life in your particular state in the US? It is such an enormous country and varied. I have been only to New York and New England on short trips when Raymond and I lived in Canada.
Keep well, keep safe.
Love.
Sylvia xxxx
0 -
Hello adagio,
It was nice to hear from you.
I was sorry to read that you have had no response from your newly assigned surgeon, even though you have tried twice. This would not inspire me with confidence. I do hope you have managed to call your cardiologist and that you have had some success in what is going on about your surgery. This is no way to treat a patient and it does remind me of what is going on here now and what went on during the three weeks that Raymond was in the hospital here, waiting for what was supposed to be emergency surgery. After two weeks of delay I complained to PALS (Patient Advice and Liaison Service), and there was immediate action, but Raymond had to go to London! This delaying tactic was going on all the time and the friend he made there waiting for bypass and valve replacement, was not treated at all until six months later, having been sent home, and collapsed in a life threatening situation and was taken off to hospital.
With reference to rheumatic fever, our mothers told us that when they complained about pains they were told it was just growing pains!
Can you explain the importance of knowing whether an aortic valve is bicuspid or tricuspid?
It is good to know that you have had some good sleep without chest noises and that you feel in a better mood. It is also good that you are not so afraid and that you are being positive by continuing to research and getting different perspectives.
I was talking on the phone to my friend in London and again she was saying how routine this kind of surgery was, even with people not in good health. Concentrate on the positive for you. You are healthy. Remember that knowledge is power and that it is essential to be your own advocate even if it is overwhelming.
Do not let anyone involved in your treatment use the coronavirus as an excuse. It has been given too much prominence to the neglect of everything else.
That is all for today. Keep well, keep safe and keep looking forward.
Love and best wishes.
Sylvia xxxx
0 -
Hello Marias,
I have just looked back at your last post on October 27th and I still do not understand what you were trying to say. Please get in touch as the words do not seem to make sense. You have not been active on the forum since October 27th and there was no reply to my PM. If you are able to post just a few words please do.
We are all thinking of you and sending love and best wishes.
Sylvia xxxx
0 -
Hola marias
Acabo de revisar su última publicación del 27 de octubre y todavía no entiendo lo que estaba tratando de decir. Póngase en contacto ya que las palabras no parecen tener sentido. No ha estado activo en el foro desde el 27 de octubre y no hubo respuesta a mi PM. Si puede publicar solo unas pocas palabras, hágalo.
Todos estamos pensando en ti y enviando amor y mejores deseos.
Sylvia xxxx
0 -
Hello adagio,
I was having another look at a large diagram in my medical book and I saw mention of the tricuspid valve and it says the three cusps (flaps) of this valve allow one-way blood flow from the right atrium into the right ventricle.
As for the mitral valve, this valve has two cusps (flaps), it allows one-way blood flow from the left atrium into the left ventricle.
As for the aortic valve, the three cusps (flaps) of the aortic valve allow one-way blood flow from the left ventricle into the aorta.
I can understand now what is happening, it is that because the aortic valve is so narrowed (stenosed) that they cannot see whether it has three cusps or two.
I am wondering what the importance is of seeing whether there are three cusps or two. If there are only two, instead of three, what does this mean, what are the implications?
I hope this helps and I shall try later to post a picture.
Keep smiling, adagio.
Love.
Sylvia xxxx
0 -
Hello adagio,
As promised I am posting a picture of the structure of the heart, which I have studied carefully and found it most interesting.
By the way, Raymond and I heard today from a patient with whom he made friends when they were in hospital here for three weeks awaiting surgery, which never came! He is recovering well after having his surgery finally in August. He had a quadruple bypass and a mitral valve replacement.
I hope this helps.
Love and best wishes from another dull and wet day in Exmouth.
Sylvia xxxx
0 -
hi all, update from me.
PET scan clear so that is wonderful news. Next step biopsy of lump and MRI of brain and cervical spine to try and sort left side muscle twitching. Until I have results of those treatment as usual.
It has become hot here as summer approaches. Work is busy as the academic year ends. Just planted some more veg and hope they can survive the heat!
Sorry to hear about adagios heart issues. Hopefully Marias will post soon. Good to hear Mary’s puppy is keeping her busy. And I hope Sylvia, Gill and all others on this thread are well.
Best regards and wishes xx
0 -
Hello Sylvia,
Quite a pleasant day here, dry and bright. There was a mild frost overnight, the first this Autumn. It's surprising how a little sunshine lifts the spirits. I've just had a look at the Exmouth beach webcam - very gloomy, wet weather and hardly a soul about, probably a day for staying indoors for you both.
Bafflegab perfectly describes Johnson's responses to almost any question. As predicted, he's set his heart on achieving the 'Boris Saves Christmas' headline, no matter what the cost to public health. If people do travel to other areas of the country to celebrate with large family gatherings then we can guarantee that the rise in deaths and infections will be through the roof again. We had planned a Christmas celebration with eight family members from across England and cancelled this weeks ago to protect ourselves and others. People need to be made aware that their disregarding how easily transmitted Covid actually is, will result in NHS hospitals being overwhelmed, which has serious consequences for cancer patients and others with life threatening conditions. I suppose Johnson's bright idea is that opening up for Christmas will distract everyone from the impending disaster of brexit.
Just read that Marks and Spencer will be opening 400 of its stores until midnight during Christmas week. I give up!
like your ex theatre nurse friend, I too noticed that my medical records were full of mistakes. In my case, after each of my stays in hospital following chemotherapy sessions. I've been told that the very expensive, state of the art IT system in Norwich is extremely complicated. I think this might mean that it's not user friendly and if it's too difficult for stretched medical staff to use quickly then mistakes are inevitable. These notes are legal documents, if we need to sue the hospital for negligence, for example, we will want to use them as evidence.
I was interested in what you were told about a paperless system. This seems to have been translated to mean that we no longer receive our test results through the post. I didn't receive my MRI results and wasn't notified of my clear mammogram, I only know it was clear because I had an appointment with my breast surgeon the following week. My friend in Saint Albans had the same experience.
Channel 5's 'The Great Plague' is something I was looking forward to watching, but haven't been able to install the 'My5' app. I'll have to ask Michael to help, he's more technically minded than I am.
Sadly I think that we may well never hear from Marias again. She appears to have made a huge effort to tell us what was happening to her in her last posts. They were so confused, but she kept trying. It occurs to me that she may have been given strong pain medication. It's a worry that there was no response to your PM.
On a happier note, adagio seems to be in a much more buoyant and confident mood. She's done so much research and is a fit, otherwise healthy woman. I hope that she'll be able to see her new consultant very soon and get on with enjoying her new grandson without this worry hanging over her.
That's all for now.
Best wishes for a peaceful and sunny, or at least dry, weekend.
Love,
Gill xxx
0 -
Hi adagio,
Some good news for the weekend. Congratulations on the scan results, what a relief! Hope you won't need to wait long for a biopsy and MRI.
I'd been wondering how your gardening was going. Nothing like home grown vegetables, even if they do come in all different shapes and sizes - or at least mine do. Everyone's garden is looking a bit gloomy here, fallen leaves everywhere. However, the daffodils are now pushing their way through the ground, and snowdrops won't be far behind.
Enjoy your weekend.
Love,
Gill xxx
0 -
Hello Helenlouise,
I was so glad to read that your PET scan is clear. I do hope that you will not have to wait too long for your biopsy and the MRI scan and then for the results.
You are definitely right to say you will carry on as usual while waiting for all this to happen.
I do hope you are successful with your vegetables in your hot weather and that you will be able to get some relaxation as your academic year comes to an end.
Life is very routine here as we go through lock-down.
Love and best wishes.
Sylvia xxxx
0 -
Hello Helenlouise and adagio,
You will have no doubt have guessed that my last post was intended for Helen. I think all this isolation is getting to me. Best wishes to both of you anyway!
Gill
0 -
Hello Gill,
Thank you for your latest post.
I definitely agree with you about Boris and Christmas. Common sense dictates that we should not open up for Christmas. It is a religious festival but it has become an over-eating, over-drinking, and over-buying presents event. I cannot believe we are being told that everything will open up from December 22nd to December 28th. This is not acceptable.
I think like you that technology is getting too complicated and I also think it is probably not the efficient time saver that it is supposed to be. I have recently read that email sending is not environmentally friendly. Computers can be a hassle as there is always something something going wrong with them. I think they could be causing a lot of stress for people.
I am going to have to end now as I have lots to do, but I wanted to say thank you for the effort you are putting in on the thread.
Keep well, keep safe.
Love.
Sylvia xxxx
0 -
Hello All -
Sylvia, thank you for asking me to tell you about my life. That was very kind of you!
We live in the northwest corner of Missouri, I always tell folks that we live in Kansas City, but we actually live in a small town north of the city called Parkville. It is a quaint little town that some of the buildings pre date the civil war. Now many of the buildings are occupied by antique, art, crafts and coffee shops. It is enjoyable to go to and browse around on a nice afternoon. The town of Parkville sits very close to the Missouri river and at one time long ago was used in shipping all sorts of trade in and out of the area. Now nothing is on the river except for the occasional sand barge. There are trails where I walk most days that are on the river as well that provides a nice peaceful scenery and a nice view. I really do love walking by the river. Sunset around the river's bend is quite lovely.
I have lived in this area all my life and really do love it. Kansas City offers sporting events, small theater and occasionally we get some of the big live theater productions that come to our town. Of course all of that is during non-covid times! Plus the cost of living in this area is quite affordable compared to other parts of the United States.
My husband and I raised three children. I stayed at home and did not work when my children were young, when the youngest went to school I started working again as a part time bookkeeper and that was 23 years ago. I still work for the same man but hours are quite limited now which is totally fine with me. My son is married and has two little girls - a two year old and a four year old, my middle daughter is married and has a one year old boy and my youngest daughter is married and has a one year old boy. One of the reasons that this pandemic is so frustrating to me is that we have not been able to see our grandchildren like we would want to. Although other people have carried on with their lives as if nothing is different still gathering as families.
I have had lots of hobbies over the years, gardening, jewelry making, knitting and crocheting, but the strange thing is after going through chemo treatment I really don't do any of my hobbies anymore. It's almost as if I can't concentrate on the project that I am working on. I keep looking and watching for easy patterns that I could crochet that wouldn't take my concentration. I also was a avid reader and that has come to an stop as well, I find that I keep re-reading the same page over and over again so it no longer is enjoyable for me.
My husband is around 5 years from retiring, he is a psychologist and mostly works with women and children who are victims of domestic violence. He has been in this field for almost 40 years and as sad and depressing the situations are that he deals with, he loves his job. And has made a huge impact on the community. Anyway when we can travel again we want to travel to England again. Our middle daughter studied at Kingston University for a year and we visited her while she was there for 10 days. It was not long enough for us to see everything we wanted to, so we keep talking about going back. We had the best time while we were there. (My favorite thing is to watch British television, lots of Masterpiece theatre and what every else I can get over here in the US.)
I can't think of much else to tell you about our life here. We also have two dogs that are always ready for a walk, a Cavalier King Charles Spaniel, named Ollie and a Cairn Terrier mix named June.
As Thanksgiving is approaching here in the US, one of the things that I am most grateful for is this message board or chats or feeds whatever is the proper name to call them. The last 3.5 years have been a challenge, but I always seem to find a sense of calm when I get online and read posts. So thank you to all of you that contribute!
Love Paula
0 -
Gill, I knew the post was for me. Thank you for your reply x
0 -
Hello Paula,
I have just read your very interesting post and learning about your life over the pond in Missouri. It is very educational to learn how different people in different parts of the world are living. The US is such a big country and so different to the UK. Raymond, my husband, and I lived in Canada from 1977 to the end of 1993 and it seemed gigantic compared to the UK and made everything here seem like toyland.
I shall write more tomorrow and hope that Mary may tune in and tell us how her life in Missouri is different to yours.
In Canada we lived in cities, Montreal, Quebec for about 3 years, then Ottawa, Ontario for about 10 years, and then 4 years in London, Ontario. We did travel a bit to other Provinces but did not get to drive across Canada, so we have the middle part missing.
That is all for today.
Love and best wishes.
Sylvia xxxx
0 -
Hello Sylvia,
I've just been reading a short article in The Lancet dated 20th September of this year. It contains a study from 97 Chinese cancer centres and a report from Lombardy, Italy's designated cancer hub during Covid. These are just examples really, as The Lancet makes it very clear that the impact of Covid on cancer treatment is a worldwide problem.
In the short-term, cancer researchers have been reassigned to managing Covid-19 and patient testing, as a result routine research has been suspended.
In the medium to longer term the pandemic has meant delays in training and recruiting staff, which has affected both early diagnosis and surgery. This has reduced the possibility of survival, particularly where delays in diagnosing advanced cancer is concerned. 'COVID-19 has had an immense and negative effect on cancer treatment and research, we should expect a new health emergency for the management of these cancer patients' (The Lancet). I think many of us here were already aware of this. It's inevitable that our NHS will soon be in the midst of another emergency. So, what's the plan? Is there a plan even?
Research holds the hope of less damaging treatments, breakthroughs and ultimately cures. We know that this last is a long way off, but it's not even a possibility without good quality, properly funded research. To move forward we need the new vaccines to work. Then there's the problem of rolling them out, monitoring and having sufficient staff to actually give the vaccination to people. It seems that the Health Secretary has the staff part under control (!) and is recruiting from a wide variety of backgrounds. Apparently they will need to watch a video on how to inject safely. There's also the problem of storing vaccines at the correct temperature. With young Matty Hancock in charge should we be worried?
Our small village now has three residents infected with Covid, one of whom is pregnant. Several others are self isolating. Yet I still get reports of older people going into other peoples' homes on a daily basis. Some may believe that the dangers of coronavirus have been exaggerated, particularly as Johnson is so keen on allowing people to celebrate Christmas together. There's far too many mixed messages and complicated rules.
That's all for now.
Sunny, but cold here. Hope the sunshine reached you down in Exmouth.
Love,
Gill xxx
0 -
Hello Paula,
What an informative post. You live in a beautiful area and your walks by the river to see the sunset sound idyllic. A lovely, peaceful way to end your day or just grab some quiet time.
I think I could spend a lot of time and money just strolling around antique shops and small art galleries on a sunny afternoon. Visiting tea and coffee shops has been a top priority since my husband took early retirement. We're probably the leading experts on the best places for afternoon tea in Norfolk - shouldn't really be proud of that! Covid has put an end to this pastime for a while, but we can wait.
We have two grown up children, one's a doctor and lives in the Midlands. She's married with a boy aged 4 and a 2 year old girl. Our son manages an IT company and lives in Scotland with his long term partner. I absolutely agree with you, not seeing grandchildren is extremely difficult. They're changing all the time and we've missed so much. Far too many people here are not sticking to lockdown rules and continue to see their children, grandchildren and friends. Their selfishness makes me so angry.
The UK is tiny compared to the States, but it's absolutely packed with history and there's so much to see and do. Also, you only need to travel a few miles to find yourself in a completely different physical environment. Wherever you are you'll be within a 100 miles of a beach. I hope that you'll have the opportunity to visit again before too long.
Keep safe and well.
love,
Gill xxx
0 -
Hello Gill,
Many thanks for your latest post and for the information about a short article that you read in The Lancet, dated September 20th this year. I think on this thread we are all aware of the impact on cancer treatment of Covid-19. Since this virus is global it is no surprise that it is having a negative impact on cancer treatment everywhere. I know that Covid-19 is awful but I still do not think that it should have pushed everything else to the back of the queue. The government did not prepare enough for a possible pandemic and when in power the Tories have done nothing but cut, cut, cut. They have regularly reduced the number of beds and over the years have not trained adequate numbers of staff. It is so much easier to poach and entice other people's medical staff, pay them less and be very colonial in their attitude. Those medical staff are needed in their own countries and they should be under contract to serve their own countries for a number of years. We so badly need to be rid of this government and keep their ilk out of power forever.
It is beyond belief that cancer researchers have been reassigned to managing Covid-19 and patient testing and that routine research has consequently been suspended.
As we all know, prompt cancer treatment is of the essence with this horrible disease.
It is true that we can expect another emergency in the NHS with the neglect of cancer and other dire illnesses. The government will have more excuses and will again pretend to care about the NHS and will even be hypocritical enough to stand doing some useless clapping.
As for all these vaccines, I am sure there is going to be a big mess up. I shall be very reluctant to have a vaccination performed by someone unqualified whose only training is watching a video. As you say, there is also the problem of storing vaccines at the correct temperature. With Hancock in charge it does not bear thing about.
The cases are still rising as are the deaths and I think all this sentimental nonsense about Christmas should be silenced and that Christmas should be cancelled. I think it is about time we had a proper lock-down, with no exceptions and all schools, colleges and universities closed down. So far we have not had a proper lock-down.
We have cases of Covid-19 and I am not surprised. Apparently our seafront was very busy today.
It was so good to hear from you and Paula about your lives in different places. I think it helps good relations. I shall read both of them in more detail this coming week. This past week has been like life on fast forward for Raymond and me and we hope for a quieter time this coming week.
Yesterday I put on a tribute to Johnny Cash whom I really like and love his songs. There is a different one this evening which I shall try to watch.
That is all for now.
Love and best wishes.
Sylvia xxxx
0 -
Hello Sylvia,
I hope this week is a little less frantic for you than the last one. It began badly for us when Michael hurt his back taking my reflexology table upstairs. I trained as a reflexologist about twenty years ago and bought a portable table, which is really far too heavy to drag upstairs. Michael's in a lot of pain and immobile, probably for the rest of the week.
As we predicted the Prime Minister has gone ahead with allowing families to celebrate Christmas together. This will inevitably cause a spike in infections and deaths which will overwhelm the NHS. Not a thought from either Johnson or Hancock about medical staff or those people stuck on long hospital waiting lists. GPs and consultants have raised the issue of patients dying while waiting for cancer surgery many times. Covid hospital treatment is entirely different from, for example, heart surgery or cancer diagnosis and treatment. We were told months ago that Nightingale Hospitals were exclusively for Covid patients. The idea was that life saving operations could still take place and would be performed well away from infected patients. There must be a good many angry and despairing doctors out there.
The chaotic hospital paperwork issue is still not resolved in my case. Last Friday I had a letter informing me that my routine 3 yearly mammogram was due! I suppose it's marginally better than the letter I had several weeks before I actually had my annual mammogram at the end of September - that one informed me that my mammogram was clear and I'd be called again in three years time. None of this inspires me with confidence. In the event of an emergency, medical staff would need to look at my notes and there's a strong possibility that these would be inaccurate.
It's getting late and I ought to stop now as I still have a few things I need to do.
Wishing you and Raymond a quieter week.
Love,
Gill xxx
0 -
Hello Gill,
I am very sorry that I have not been able to answer your latest post. I have a lot going on here and I do not seem to have time to sit and relax and take care of the thread. I shall try to get back as soon as I can.
I did manage to have a quick look at the briefing late afternoon, but I am not impressed with what is going on. Christmas should be cancelled and we should have a proper lock-down. The government's handling of the coronavirus from start to finish.
It is about time they remembered that there are lots of cancer patients out there that need their attention. A properly funded NHS should not be in this state. We need more nurses, more doctors and more beds. Years and years of cuts have caused all this.
Thinking of you, keep safe and keep well.
Love.
Sylvia xxxx
0 -
Hello Sylvia,
Neither if us have much spare time at the moment. Moreover, it's difficult to post anything useful as nothing much is being reported on the subject of TNBC. However, I've just been reading an article regarding a new blood test which may detect 50 different cancer types at a very early stage before the patient develops symptoms. I don't know if this includes breast cancer, but it does identify head and neck cancers, so might be useful in identifying mets perhaps. The test will be trialled by the NHS. Apparently the Galleri test has been developed by Grail, a US company. No sooner had it hit the newspapers than Matthew Hancock was declaring that the UK was building a world leading diagnostics industry, not just in Covid, but other diseases too. Does this man ever think before opening his mouth?
I no longer watch Covid briefings as the posturing and waffle by Johnson and co is just tedious and frustrating. I did sit through Questions to the Prime Minister and was pleased to see the Speaker reprimand Johnson for demanding that Starmer answer HIS questions. Our toddler of a Prime Minister is no more than an expensive embarrassment. His Brexit negotiations appear to have stalled and we're moving closer to a no deal conclusion which will result in drug shortages. We have to hope that it won't impact on cancer treatment or other life threatening conditions.
Foggy and very cold here today, not a day for leaving the house.
Please don't rush to answer this, you must find time for yourself and Raymond in addition to everything else you have to do.
Stay safe and well.
Love,
Gill xxx
0 -
Hello Gill,
Thank you for your latest post and thank you so much for being such a devoted poster.
It is true that there is not a lot to say on the subject of TNBC. Patients have so much more information now that it gets a bit repetitive when going through the stages of the cancer journey. We depend on the thread of hearing from new patients who are not informed to tell us what is bothering them.
I did hear on Radio 4 this morning about the new blood test which may detect 50 different cancer types at a very early stage and before symptoms develop. I tend to be a bit sceptical about things like this, especially when I think making money and medicalising people is behind it all. I shall keep a lookout for more news as the years go by. I think there is a lot of sensationalism going on in an attempt to distract us from the present problems of the coronavirus, the long NHS queues waiting for cancer treatment, the state of the NHS, the Brexit fiasco and the inept Tory government and the dumbed down front bench. How is it that Matthew Hancock has managed to keep his job? He waffles on and never stops boasting.
I had to turn off the last Covid briefing. I get so angry and I think they are useless.
I saw the last PMQs and did notice that the Speaker reprimanded Johnson. It was about time. Boris Johnson is so rude.
I agree with you that we are heading towards a no-deal Brexit. I just wish that we could have another referendum now that we know more and know the tricks that were played on us. I am sure that we are heading for disaster.
I shall end this post and then I shall answer the other one. A lot of my time has been taken up the last eleven days trying to keep an eye on a close cousin who is very unwell in hospital. They do not seem to be able to find out what is wrong with him. He has an infection in the blood and a mass of infection at the base of his neck near the spine. I keep being told that it is a rare infection and they do not know what it is. I am getting frustrated with how long it is taking to identify this infection.
That is all for now. Talk to you on the next post.
Love and best wishes.
Sylvia xxxx
0 -
Hello again, Gill,
I am re-reading your post to me of November 23rd.
I was very sorry to read that Michael had hurt hos back taking your reflexology table upstairs. I do hope his back is improving. I was interested to read that you had trained a Reflexologist twenty years ago. Let me know how he is.
I do agree with what you said about the Prime Minister allowing families to celebrate Christmas together. It lacks all common sense, but then I think it was one of my heroes, Thomas Paine, who said "common sense is not so common". As you say, it will cause cases to go up and put even more pressure on the NHS. I think Christmas should have been cancelled. I think it is immoral as well that all these adverts on the television are emphasising eating too much food. We have a global problem of type 2 diabetes and sugar is a big culprit, and yet we keep getting shown chocolates, cakes, rich desserts and so on. The amount of junk food is unbelievable. We have too many overweight and obese people and the emphasis should be on cutting down and eating a varied diet.
I agree with you, as well, about the Nightingale Hospitals. There was such boasting about how many were being built and then they stood empty. Oh yes, of course, Boris did not pull all of those thousands of doctors and nurses out of a magic hat, did not plunder the magic money tree and so there were no doctor and nurses to man them. It has just been announced that the RD&E is the first hospital to start using the Nightingale Hospitals for Covid patients. Apparently Exeter has high rates of the disease and I think this is due to the University of Exeter and the Exeter College bringing back all the students. Cases of Covid are high in Plymouth and Torbay as well.
I do hope you will soon get your hospital paperwork issue sorted out. I think the muddle is getting worse and worse and that records have mistakes in them. Raymond and I have both been on the receiving end of mistakes.
I have to end now as I need to try the hospital again.
In my next post I want to tell you some information I read in one of the papers about The Chancellor.
Take care, keep safe.
Best wishes to you and Michael.
Love.
Sylvia xxxx
0
