Topic: Calling all triple negative breast cancer patients in the UK

Nov 16, 2020 12:46PM - edited Nov 17, 2020 04:05AM by pkville

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

Nov 17, 2020 03:15PM adagio wrote:

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

Nov 18, 2020 09:26AM - edited Nov 18, 2020 09:27AM by sylviaexmouthuk

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

Nov 19, 2020 04:14AM sylviaexmouthuk wrote:

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

Nov 19, 2020 05:41AM sylviaexmouthuk wrote:

Hello Marias,

I have just looked back at your last post on October 27^th 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 27^th 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

Nov 19, 2020 06:34AM sylviaexmouthuk wrote:

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

Nov 20, 2020 03:16AM helenlouise wrote:

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

Nov 20, 2020 03:57AM Rosiecat wrote:

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

Nov 21, 2020 04:16AM Rosiecat wrote:

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

Nov 21, 2020 10:57AM - edited Nov 21, 2020 10:59AM by pkville

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

Nov 22, 2020 06:21AM sylviaexmouthuk wrote:

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

Nov 22, 2020 07:19AM Rosiecat wrote:

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

Nov 23, 2020 02:35PM Rosiecat wrote:

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

Nov 27, 2020 04:21AM Rosiecat wrote:

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

Nov 27, 2020 06:13AM sylviaexmouthuk wrote:

Hello again, Gill,

I am re-reading your post to me of November 23^rd.

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