Calling all triple negative breast cancer patients in the UK
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Hi Sylvia, and Gill and all here,
I can't understand how the NHS has become in such bad shape. Is it that there is not enough money paid into it, or is there enough money but it is taken and put into other government causes? At the end of the day, it must be about money. Here too everything health-wise seems to be mismanaged, but still we get prompt responses to requests for care. This got messed up for a while because of the Covid, but now we are being urged to get care for put-off problems. Cancer issues, however, were looked after all along as far as I know. I saw my oncologist for a routine 6-month follow-up in April, which was followed by ultrasound and biopsy very quickly, if you remember me telling you that. I do hope your phone calls will be answered, is that the Prime Minister's fault if they are not? Who is running the NHS?
I agree that TNBC treatment does not seem to have made much progress except for the immunotherapy treatments. I did read an article the other day that said the sooner after surgery that one starts chemo the better one's chances of 5-yr survival. I immediately thought of Sylvia who has said she waited some months before treatment.
As for Covid, it is being used as a political football here since we are getting close to a presidential election. I think we the people are the losers here, we are pawns in the battle. Anyone who watches TV can see people marching in protests and rioting in the streets of some of our big cities, and it doesn't seem to be a problem if people don't wear masks or keep distance. But beware the ordinary people doing the same.
I am hearing that the wise decision this fall is to get a flu shot in September and again in December, to help ward off illness. Are you in England hearing this? Will you be able to get the shots or will you get them at all?
I think I am doing okay with the tick disease, the last blood draw I had showed still a remnant but less than before. The doc said we will do no more tests since it continues getting better.
I am spending the night with girlfriends tonight for birthday, even though it is the 4th. It will probably be the 5th before we go to sleep! Tomorrow will probably be quiet day, unless my family invites me and the puppy. Sunday there is a very large community gathering going to occur, with food and festivities and music. I will probably not attend that, they have excused everyone over 60 from working at it, and since I am 68 I will steer clear unless I can find a quiet corner to see what's going on.
My shoulder pain has made a comeback, I am quite disturbed about that, I am going to let it be and see if it gets better for a couple of weeks. I do hope, hope, hope I haven't damaged it again.
Off for now, love to all
Mary
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Hello Sylvia,
A belated happy birthday. September is a beautiful time for a birthday, my daughter was born on September 13th and I remember that the weather was always warm enough for outdoor parties. I was very impressed by Raymond arranging for your birthday to be mentioned on air. It must have made your day. Lonnie Donegan was a favourite of mine and many, many years ago I saw him live.
I now have an appointment for a mammogram (September 25th), but still have to arrange my annual check-up with the breast surgeon. I telephoned my support nurse and left a message. No reply yet. This is very wearing and very tedious.
I agree that chemotherapy for breast cancer has seen few changes over the years. Radiotherapy has become much safer though, with fewer lasting side effects. When I first volunteered at the hospice there were patients who no longer had the use of their arm following radiation because it was given in too wide an area. It seems that the more efficient one dose will be offered soon. Herceptin has completely changed the prognosis for women diagnosed with HER2, so there are good things happening. Chemotherapy remains brutal, permanently damaging to many and outright dangerous for some. I wish there was an alternative on the horizon.
Johnson's behaviour during Questions to the Prime Minister was astonishing. Pointing and calling Keir Starmer 'Captain Hindsight' and an IRA sympathiser. The Speaker should have asked him to leave. Appointing the ex Prime Minister of Australia as a trade advisor will prove disastrous for the UK and, to me, it seems that this is precisely what Cummings wants.
NHS doctors are being told to stock up on drugs as shortages are expected after Brexit. Will this include cancer drugs? This is all so worrying.
I've had to put my bike buying on hold as my left knee has become very painful after only short walks. I'm hoping this is temporary as I need to exercise. I wonder if Raymond's foot has improved any?
Fingers crossed that your electricity problem has been sorted out so that you can both enjoy a peaceful weekend.
Love,
Gill xxx
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Hello Mary,
I just wanted to wish you a Happy Birthday.
I will reply to your post later.
Take care.
Love.
Sylvia xxxx
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Hello Gill,
Tank you for your birthday greetings.
I shall write to you and Mary later on today.
Love.
Sylvia xxxx
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Hi Mary,
Hope you don't have too much of a hangover today, but if you do, it's important to remember that those sort of paries are usually the best 😉
I thought you were doing so well with your shoulder. Have you been overdoing it on the farm? It may be a glitch that will quickly recover after some rest - fingers crossed.
The NHS is a money pit, the population has grown so much since its inception and treatments/surgeries are much more sophisticated and expensive. Many people who wouldn't have survived twenty years ago are now going on to lead full lives, so costs rise year on year. There are also far too many senior, middle and junior managers, largely ineffectual and overpaid. Having said that,the NHS also has to cope with our lazy, duplicitous overgrown schoolboy of a Prime Minister who puts all his energy into making his elite friends and Tory Donors even richer. All our vital services, health, police, social care, education, judiciary, civil service, local government and so on have fallen victim to this man. Public sector contracts are no longer put out to tender (a legal requirement), but are awarded to his wealthy friends. The country is in such a mess and deeply in debt, I dread to think were we'll be this time next year. Rant over!
Hope you're enjoying your puppy and having lots of adventures together.
Love,
Gill xxx
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Hello Mary,
In order to understand the NHS you would really need to have lived in the UK and to have been following it from its inception in 1948. After the second World War in 1945 the country voted in a Labour government under Clement Attlee and he began to try to re-build the country after the war, and the poverty and inequality that existed in the country before the war. The Conservative government and, indeed, the doctors, were against the introduction of the NHS and certainly the Conservatives have been against ir ever since, despite what they say, and despite all their hypocritical handclapping recently.
It has been underfunded, over used and abused ever since. The funding has not kept pace with the huge growth in population and the growth in all the high-tech equipment that is now used at the drop of a hat. It was a basic health service, with virtually no sophisticated equipment except basic x-rays. It was supposed to be delivered free at the point of use and paid for out of taxes. I think people just took this to mean 'free' and they still see it as free. Nothing comes for free in this world. The government at that time thought and probably feared that there would be a rush for treatment initially and then this would die down. It did not. The government had to introduce prescription charges and consequently in the election of 1951 Labour was voted out and Winston Churchill and his Tory government were voted back in. it has been a see-saw like this ever since. Even today people do not like paying for basic over-the-counter medications and think they should get it on prescription, because it is 'free'.
The UK is overpopulated, about 70 million, with 60 million of that number being in England. Apparently there are now 15 million people on a hidden waiting list for treatments. Because of Covid, cancer patients are not getting their proper treatments or referrals. I hope this helps you to understand. It is very different from your insurance based health system.
What I think it seriously needed here is for people to help themselves to keep as healthy as they can. Apparently about two thirds of the population here is obese or overweight, there is too much junk food and not enough physical activity.
Because of Covid the GP surgeries are not open and functioning as they normally do. Most of the consulting here where I am is being done by telephone and that call will decide whether you can get an appointment at the surgery, which is really closed. If you do get to the surgery you ring a bell and are ushered in to an empty surgery and you will be dealt with etc. It seems this might be the way of the future with telephone interviews, on-line videos, patients sending photographs of visible symptoms to the surgery. I believe that face-to-face interviews with your doctor are necessary. Of course with Covid thee have to be precautions, but I think the system introduced now will be maintained.
As for who is running the NHS, I think it is slowly being privatised, is not connected, is certainly too bureaucratic with too many paper-pushers and not enough front-line staff. I think there is a lot of waste.
As for breast cancer treatment, I think we still really have the same procedure for primary breast cancer, for all types and tumour statuses. This is surgery, chemotherapy and radiotherapy, then after-treatment medication for the hormonals. There is, of course, immunotherapy but the drugs are just as toxic. There seems to be quite a variety of drugs for metastatic breast cancer, but they seem to be just as lethal, but can keep patients alive.
I did not understand what you meant by own breast cancer case. I had a large tumour, so I needed six months of chemotherapy before surgery in order to shrink the tumour to make the surgery possible. I started the chemotherapy in November 2005 and ended it at the end of April 2006. I had seventeen days to recover and then I had the mastectomy on May 17th and then had radiotherapy about a month later, for three weeks. I then was told that I had had a complete response. I thought that my oncologist and breast cancer surgeon were completely dedicated.
I delayed all this treatment for many months before I decided to have the orthodox treatment, but I was still very proactive in other treatments before I decided to go the orthodox way. I did take Iscador for five years, starting before the orthodox treatment and continuing for five years. I have always told people on the thread not to delay, but they must be comfortable with the treatment to which they are consenting.
As for flu vaccines, Raymond and I have not heard anything here. I should think they will begin with the most vulnerable and those going through treatment. As for Covid-19, I think it will drag on.
I do hope you are having a nice birthday today.
I do hope your shoulder pain will go away.
Thinking of you and sending you love and best wishes.
Sylvia xxxx
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Hello Gill,
I am going to take a break for a while but I shall get back later today.
I did read your post to Mary and I think we are on the same wavelength regarding the NHS. I also argee with you on Boris, an absolute disgrace at PMQs.
Talk soon.
Love.
Sylvia xxxx
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Hello Gill,
Raymond and I have just had a mug each of Pukka Supreme Matcha Green Tea and some Montezuma 100% dark chocolate, so we feel somewhat revived after a busy week which has included a power failure in a transformer along the road and a visit to the dentist for each of us under Covid-19 conditions. The power was off for a few hours, but spoilt the evening, and the visit to the dentist was running an hour late, so we were very tired when we eventually got out and started to walk back home!!
I was interested to read that your daughter is a September baby. This is yet another Virgo! I seem to have a group of them around me, with birthdays going from mine on the first to others on the second, third, fourth and of course Mary on the fifth. When is your birthday?
I did enjoy listening to Lonnie Donegan singing Putting on the Style. You were very lucky to have seen him live.
I was glad to read that you have an appointment for a mammogram on September 25th and I do hope you get a date soon for your annual check up with the breast surgeon. I can understand how frustrating it must be not to get an answer when you telephone, but this seems to be the name of the game. I find that it is exceptional to get a person answering the phone these days, especially at the GP surgery and the hospital.
I usually try to read the Active Topics and pick out any threads that appear interesting. I pay particular attention to anything on the triple negative threads in the TNBC forum. As you say, chemotherapy drugs have not changed that much and very often we still see doxorubicin, epirubicin, cyclophosphomide, docetaxel and paclitaxel. We still see fluorouracil and methotrexate, but not so often. The platins seem to be quite common as well now. I think it is with metastatic breast cancer of all kinds that they seem to be trying a variety of drugs. It is the immunotherapy drugs that are now very popular. I am not sure how well they really work. Two of my friends with metastatic cancers, one with triple positive breast cancer and the other with metastatic melanoma cancer, both died from these despite a good variety of different immunotherapy drugs but they did extend their lives. The one with triple positive had metastases relatively quickly after being declared NED. I think the Herceptin took a great toll on her.
I saw recently a drug named as sacituzumab govitecan (Trodelvy) and another one atezolizumab (Tecentriq). These immunotherapy drugs are all quite difficult to pronounce and remember! Do you know these drugs?
I know that the two drugs that I have mentioned are being used for TNBC metastatic but also for other cancers.
Someone was also talking about cyber knife radiation. I remember that from years ago when someone called Josephine. She was very informed and a lab technician who was having cyber knife radiation. She developed metastases and we really do not know what happened to her. She was from the UK like the two of us.
Changing the subject, I agree about our Prime Minister, Boris Johnson. He is an embarrassment and we need to get rid of him. He is no match for Keir Starmer and the Speaker should have reprimanded him over his remarks to Keir Starmer and made him leave the Chamber! Instead of that nothing was said or done. Yesterday I saw him again doing his usual acting and rapid talking praising up Tony Abbot. What a mockery!
I wonder how much more of this we can all take? It is going to be dire if we have drug shortages after Brexit. It is bound to include all drugs. We shall be short of them in the same way that we have been short of everything during Covid-19. There is still not enough equipment.
I was sorry to read that you have had to put your bike buying on hold because of a very painful knee after short walks. What do you think is causing the pain?
Raymond's foot is about the same. Fortunately it does not stop him walking. In fact, it is worse if he is sitting and not raising his feet. We have bought some special compression socks and they seem to relieve the puffiness. We shall see how this goes. I would like a diagnosis but Raymond wants to stay clear of GPs and consultants because they just dish out pills. I still think it might be lymphoedema due to damaged lymph system and my nurse friend at Bart's hospital says it could be, as did the podiatrist. I shall keep you posted.
It is a quiet day here today and such a relief not to have the horrendous noise from the workmen digging up the whole of the road as they replace ancient gas pipes. This week we have not been able to hear ourselves speak. It is a mainly cloudy day but no wind and no rain and all the birds are strangely quiet, even the pigeons and seagulls. It is quite eerie.
It is so good to have Mary posting and to know she is doing something special for her birthday.
We do need to hear from adagio about what is happening to her. She is strangely quiet.
Do you ever look at the two threads that have such wonderful photographs on them, mainly posted in by a woman called Lisa? They are well worth looking at.
That is all for now.
Love.
Sylvia xxxx
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Hello Sylvia,
Just a quick email to let you know that I'll be replying either later today or tomorrow. I was about to get back to you yesterday when a friend phoned and the call lasted for an hour and a half.
Like you, I'm concerned about adagio. It may be that she's had her surgery and is in hospital recovering, so perhaps not feeling up to emailing yet.
Talk later,
Gill xxx
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Hello Sylvia, Gill, Mary, Kath and Marias
One week has gone by since the angiogram - I am still very bruised in the groin from the surgeon having to apply manual pressure with his fist to stop the bleeding and then he stitched the artery which was excruciating. I found the whole procedure quite traumatizing. However, I am now recovering and waiting to hear from a valve specialist !
The results of the angiogram show that my coronary arteries are in great condition - no plaque or fat on the walls - so the actual blood supply to my heart is excellent - but the aortic valve is severely narrowed and the mitral valve is leaking. I really don’t want to think about it too much because if I hadn’t had the ultrasound if the heart done I wouldn’t know about it - and I really do not “feel” any different - but somehow just knowing there is a structural issue in my heart has changed the way I approach life in general. I go to see my regular cardiologist in person this coming Thursday - I have a lot of questions.
I have had a heart murmur my whole life ( asymtomatic) and I am wondering if this is what has caused the wear and tear in the valves?I am terrified of hospitals, anaesthetics, surgeries etc - I guess with being a nurse myself, it is a case of knowing what can so easily go wrong! I have to learn to trust the experts more.
I can do my walking now which is great and I am sleeping well. The fear of the unknown is a reality.
Having health issues during this Covid is problematic and it is nigh impossible to actually “see” a doctor - over the phone is just not a comforting experience for me.
My computer has broken down completely - so now I have to shop for a new one and hopefully someone is able to retrieve my data from the broken one. One of the trials of computers - a curse and a blessing. Thankfully I have my iPad .
Lovely to read all the posts. Life is tough for so many people around the globe. I continue to be grateful and search for the positives daily. Stay well and safe everyone - will post again when I can
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Hello Sylvia,
Very relieved to hear from adagio. The whole experience seems to have been very traumatic and painful though. Surely something could have been done to numb the area before stitching? Too many medics seem to think that it's perfectly alright to expect people to just put up with the pain they inflict, well it's not.
Interested to hear that you have a glut of September birthdays. We have a cluster of close family birthdays in February and March, in fact only my daughter is at the other end of the year. My son was born on my birthday, February 6th,so we're both Aquarians. Apparently Aquarians are truth sayers and never take things at face value, but are always questioning. Astrology is of no interest to me whatsoever but I've just looked at my supposed qualities online - I'm quite pleased with them all!
Still no appointment with my surgeon and no one's answering the phone. Covid seems to have made a bad situation worse. I just hope that anyone who finds a lump or notices changes in their breasts are not put off by the silence. Sometimes we have to make a nuisance of ourselves. It's Pinktober - breast cancer awareness month very soon. I'd much rather ignore the pink and have a more radical organisation that made women and the public in general more aware of the real issues with breast cancer. I remember cocooncat on the thread, saying how angry the whole pink, sugary sisterhood emphasis made her. The received wisdom that suggests women get diagnosed, have surgery, have chemotherapy then trot happily off back into there old life. Well, they don't.
I don't know very much about immunotherapy drugs, (and yes, they are difficult to pronounce), but I do know two people who have been treated with immunotherapy. One has later stage bladder cancer. He found the treatment very difficult to tolerate and was told after a few weeks that it wasn't working. He's back to having surgery every few months and palliative chemotherapy. The other person had/has advanced malignant melanoma and his immunotherapy has proved very successful and with minimal side effects.
Like you, I often browse the site for photos. Those downloaded by 'so called Lisa' are exceptional, I think she must be a professional photographer. Looking at the good things in our world helps to give us some sense of perspective when everything seems so dark.
I've been looking at Chris Woollams' latest newsletter. It seems that most of us are short of vitamin D which is crucial for a healthy immune system. It appears that vitamin D also restricts inflammation in the gut and - not sure about this one at all - corrects cancer cells. Apparently we need higher levels of vitamin D than medics recommend. I'm going to look at this in greater detail later on. I've been taking a vitamin D supplement since chemotherapy ended.
That's about all for now.
I'm so glad that Raymond is still able to walk despite his swollen foot. My knee problem has spread to the rest of my leg, but only at night. During the day, my knee is still painful and restricts my exercise, even for short distances.
Keep safe and well and enjoy the more peaceful Autumn season by the sea.
Much love,
Gill xxx
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Hello adagio,
It was good to hear from you. I think anyone would be traumatised by your experience with the angiogram. Excess bleeding followed by the excruciating stitching must have been very difficult to cope with. Surely pain relief could and should have been offered?
Good news about the clear arteries - healthy lifestyle clearly paid off. I can absolutely understand how being a nurse makes surgeries and anaesthetics more worrying. The few bad outcomes naturally stand out in your memory more powerfully than the many good outcomes.
The sooner you have the results, the better. All this waiting just creates more anxiety. I hope that you have a clearer idea of exactly what surgery you need within the next week.
As you're trying not to think about it too much, please don't worry about responding to this.
You are in my thoughts and prayers.
Love,
Gill xxx
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Hello adagio,
It was such a relief to find your post. I have been wondering how you were getting on. It sounds as though you had a nasty time with your angiogram. Did you not have a local anaesthetic? I was surprised that the procedure was done through the groin and not through the right arm, but I suppose there must have been a reason. I was surprised that you had bleeding that needed manual pressure to stop it and that you had to have the artery stitched. I am not surprised that you found the whole thing traumatising. I hope you are feeling much better. Just tell yourself that you now have this procedure behind you.
When Raymond had his angiogram it was done through his right arm and it was done through a cannula, no anaesthetic, nothing. He just felt a bit bruised the next day in his chest. Of course, he was in hospital and so an in-patient. I am wondering whether there is different procedures whether you are in or out?
I was glad to know that your coronary arteries are in great condition, with no plaque or fat on the walls and that the actual blood supply to your heart is excellent.
I was sorry to read that your aortic valve is severely narrowed and that the mitral valve is leaking. Try not to worry. Valvular heart surgery is carried out quite regularly these days. You will be fine. My mother had valvular heart disease and so did Raymond's mother. They did not operate quite so routinely during their lifetime. They were on medication. They had developed these valve problems as a result of having had rheumatic fever as children (quite common then) and had had it again as young adults. It damaged their heart.
I do hope all will go well when you see your regular cardiologist in person this coming Thursday. I am sure you will know all the questions to ask, but please remember you should be given a good printed booklet with all the details of valvular heart surgery from beginning to end of treatment.
I am sure your cardiologist will be able to tell you whether the heart murmur has caused wear and tear on the valves. If the system is anything like it is here, you will probably be told that it is all part of the ageing process.
I do understand your feelings about hospitals etc. I have the same feelings. When I was going through my breast cancer treatment, I was fine going through all the chemotherapy and radiotherapy, but my big fear was staying in hospital for five days and being away from home. Raymond and I have the same feelings because we feel that as long as one of us is by the side of the other, we shall let no harm come to each other.
This morning we received an email from a man with whom Raymond made friends during that three weeks stay in the RD&E when they were all there for emergency surgery. Everything kept getting delayed. I made a complaint to PALS and things really started moving for Raymond. This other man was still waiting and he needed valve and artery surgery. He was due to be moved to another hospital for it when it was delayed again because he needed dental treatment. Then we had the coronavirus and he was sent home to wait. This morning he told us that on August 7th he had an emergency event at home, was taken to hospital and now all the surgery is behind him. He ended up having a quadruple bypass and valvular surgery.
I do not think it is right that patients are made to wait that long. He was in hospital in January for emergency surgery and ended up getting it in August because of an emergency situation at home.
I was so glad that I kept an eye on everything while Raymond was in hospital and got him out of that hospital in London before the Covid-19 hit us like a bomb.
I think we all know from our breast cancer experience that we have to be proactive about what is happening to us and question everything about our treatment. We have to keep an eye on what drugs are being given to us and why.
I do hope you will get your treatment quickly, as, once again, we all know from our breast cancer experience that waiting for treatment is one of the worst experiences along with waiting for results.
I was interested to know that you are a nurse. What kind of nursing did you do?
It is good to know that you are able to go walking and that you are sleeping well. Just be positive and tell yourself that you will get through this.
It looks as though we are all in the same boat with our GPs. I definitely do not like this doctor by telephone system or with videos. We are being told this is the way of the future. I think nothing beats face to face meetings with your GP. I remember on GP telling me long ago about how much he could tell by just looking at me.
I was so sorry to read that your computer has broken down completely and that you have to shop for a new one. Are you very proficient with computers? I am not and am really a reluctant user. I just know the basics. Raymond is the 'expert' and has been using computers since about 1968. He is a retired Chartered Electronics Engineer and has been in design so has actually designed mobile phones, payphones etc. I shall be very interested to know what computer you buy. Apparently young people today are more into doing everything on their smartphones, rather than computers. In fact a lot of them do not know what a computer is! How different is using a tablet to using a computer? Do you have a laptop or a desktop computer?
I am very concerned about fraud and lack of privacy on computers.
Are you still following Chris Woollams? I have not yet had time to read his latest email.
How is your husband coping in all of this?
That is about all for now, adagio. Please stay in touch and let us help you all we can.
Take care, stay safe, be strong and confident.
Love.
Sylvia xxxx
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Hello Gill,
Many thanks for your interesting post. I am going to take a break but I shall try to get back later today.
Love.
Sylvia xxxx
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Hello Gill,
Many thanks for your post. I do agree with you about adagio's experiences with her angiogram. I do not think it should have been like it. When I get to talk to my friend who works for a cardiologist at Barts, I shall ask her about this. Last time I spoke to her she told me that they were doing ten coronary bypass surgeries a day. That just shows you something! She deals with patients on an everyday basis who are facing these kinds of surgeries, so she is very informed. She was so helpful when Raymond was going through all of this.
It is interesting about the character profiles of those born under certain astrological signs. I am a typical Virgo and Raymond a typical Capricorn (January 4th). We are supposed to be an ideal match! I shall remember your birthday on February 6th.
You must be getting very frustrated with not getting any answers from your phone calls. It is totally unacceptable. Have these people no understanding of the worry and anxiety that patients go through about their approaching check up appointments. Everyone that I speak to, whether with matters at the GP's or at the hospital's there is never anyone answering the phone. I dread to think what it must be like for patients starting treatment or waiting to get referrals. It is true that sometimes the only way to get anywhere is to make a nuisance of yourself, or, as I say, being assertive and being proactive.
Reading through some of the different threads, I am surprised at all the different drugs that are being used, especially for metastatic, stage 4 breast cancer. I should not be because that is the way orthodox medicine seems to work, a pill for an ill!!. They all have side effects, but there is always a pill to deal!! I was horrified by what Raymond was given at the RD&E and I was not surprised when he ended up with his heart stopping. He was given too many drugs to lower supposedly high blood pressure when he did not have it. It seemed to be a given that if you had heart problems you must have high blood pressure. We kept saying about this, but got ignored.
I do agree with you about breat cancer awareness month in October. We do not want gimmicks about breast cancer, we want the real problems about it discussed and women to get proper information. At the moment it is all very superficial.
I wonder what has happened to cocooncat?
Sometimes I do wonder how much real progress has been made since I was diagnosed and later started this thread to bring breast cancer out of the dark ages in the UK, especially breast cancers of all kinds with triple negative receptor status. The basic treatment still seems to be the same. I do wonder as well what the statistics are for patients becoming metastatic. It is difficult to know on the forum because most of the patients are American. I think the UK is probably behind, but I do not really know.
I have not had time to read Chris Woollams newsletter, but I know he has been talking about the importance of vitamin D for quite some time. I am not surprised to read that most if us are short of vitamin D and we need it for a healthy immune system. I read many years ago that breast cancer patients were often found to be very low or deficient in vitamin D. It is difficult to get from diet and we do need a regular dose of sunshine. I have been taking Solgar vitamin capsules for over 15 years. I did get tested many years ago and was congratulated on the level, but I do not know what it is now. These things should be tested regularly at GP health clinics, but everything is lax. Raymond was told at the GP surgery where he went just before Christmas that he was due for a health check up, blood test, urine, etc. He was never given a proper appointment and still has not been called in.
I have been reading some of the other threads on the TNBC forum and am amazed at the way new threads keep being made when the answers are all in the existing threads. It makes it so disjointed. The latest one is all about ports. Surely the way chemotherapy is to be given should be a conversation between the oncologist and the patient. The patient should be told what the options are. I had my chemotherapy through a simple cannula on the back of the hand. It was done each time I went for my treatment. I was fine but, for some, there can be a problem as time goes on with finding a vein. This is such a simple way to deal with things.
There is, of course, the pic line, but that is not without problems.
As for the port, I would not go for that. When I was going through treatment, and had finished the chemotherapy, the oncologist said that she though I might need some more chemotherapy, after surgery and radiation, and that she would like to have a port inserted, at the same time as my mastectomy surgery and this was done. She did not explain that there might be problems and she did not tell me that I would have to have regular check ups to flush out the port with heparin. I had it done, went for my first check up and all was well. The next check up the nurse could not get it to work, said it was blocked and I would have to wait around that day for an x-ray. I did this and was told that the tube from the port into the vein had kinked and that the port would have to be removed. To do this I had to go back to the hospital for the day and under general anaesthetic had to have it removed. I was not happy and refused to have another one installed. In addition, I never needed any more chemotherapy!
I would, if I were a new patient, become very informed before having one. It left a nasty scar on the left side of my chest, which is still very noticeable, especially compered to the mastectomy scar which is barely visible! My breast cancer consultant surgeon was a woman and did very neat work. The other surgeon installing the port at the same time was a man!
It looks as though we are back on the Covid-19 merry-go-round!
PMQs today was a shamble. Boris was out of order, trying to tell Keir Starmer what questions he should be asking and the Speaker was useless. Bring back the former Speaker John Bercow. Bring back parliament. No body is challenging the prime minister.
That is all for now. I definitely need more hours in the day.
Take care of yourself.
Love.
Sylvia xxxx
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Hello Sylvia,
I'm writing this whilst waiting for my GP to call. I decided to let the surgery know that my knee wasn't working properly and that I'd been suffering from burning pains to the front of my left calf at night for several months. The pain wakes me at night and then keeps me awake. I'd put it down to the side effects of chemotherapy, but think I should check.
So, Virgos and Capricorns are a good match? It certainly worked for you and Raymond. Michael is Pisces, and is supposed to be sensitive and a bit of a dreamer. He's neither, but is very good at putting up with my hot temper. We'll have been married for 45 years on September 20th.
I believe that most people are short or very short of vitamin D even in Summer. I don't think that the NHS emphasise the need for taking vitamin D supplements during Autumn and Winter nearly enough. I wrote something about it during those very early days of Covid. Some scientists put information online about vitamin D and its importance in maintaining a healthy immune system - essential during the pandemic. Further research led doctors to the conclusion that it made no difference to recovering from Covid whatsoever. Now it seem that it might well help after all!
I agree that there are too many threads here. Why are new threads opened in so many instances every time someone new to the site has a question? I did offer my own experience with PICC lines to a poster the other day. Her port was painful and very visible but her doctor advised her to keep it just in case she needed further treatment later on! I think that any unnecessary pain needs to be shown the door as quickly as possible. PICC lines have their problems, but are a very quick temporary solution for those of us with uncooperative veins.
Either the Speaker is frightened of Johnson or he's protecting the peerage he sees on the horizon. He savaged Matthew Hancock though. What a mess we're in now. I never thought that the UK would break international law or become known as a rogue state. How are we to recover the respect of other countries? Why would any country want to trade with us after this week? My main concern is access to medication for the many people who need it, particularly cancer patients and those in palliative care for whatever reason.
My GP has just called and we had a long talk about why I might be experiencing this leg pain. She wants to rule out bone mets and will write to my oncologist, marking it urgent. She would like me to have an mri on my spine. I'm not keen, but I don't think I can sensibly leave this for much longer. The new appointments system adopted by my GP surgery is very impressive and much quicker than making appointments in the usual way, which involved a long wait. I had the choice of an email response, a phone call or a face to face appointment. I hope other surgeries adopt something similar. I was also asked if I considered my case as urgent or could wait a few days, I said it could wait, but obviously the GP disagreed.
Thank heavens my tablet has suddenly reverted to normal this morning. It makes posting here much easier. I've no idea what happened, or why it's now back to normal, I'm just grateful that it is.
Have a peaceful weekend Sylvia.
Love,
Gill xxx
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Hello Gill,
I have just sat down to answer your last post, glanced at the clock and saw that it was exactly 1:43 pm. It is exactly ten years ago today, to the minute, that I started this thread. I had been doing some posting on Calling all TNs and also on the High Calcium thread (in the forum Not diagnosed with metastases but concerned) and I decided to create the thread because I was convinced breast cancer was somewhat in the dark ages in the UK, especially TNBC tumour status, and here I am still doing it. Of course it soon spread beyond the UK and there have been people from many different countries participating, and it has been very enriching. I do not know what the future will bring for it.
Happy birthday to our thread and many thanks to all those who have viewed, are viewing, have posted and are posting.
I shall end this and answer yours.
Love.
Sylvia xxxx
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Hello Gill,
I do hope that you managed to find out what is causing those burning pains. Please let us know what happens. If you are to have an MRI scan, I do hope you are not kept waiting. Have you had one of these scans before? I have never had one and would not be keen to have one so I can understand your reluctance. I have been told it is very noisy and very claustrophobic.
Raymond and I will have been married 44 years on October 30th this year.
I do agree with you about the importance of vitamin D and I think it is probably of great importance with Covid-19. The darker the skin the more difficult it is for vitamin D to be absorbed. The best way of getting vitamin D is through sunshine and you do not need hours of exposure to the sun to get the necessary supply. I think probably twenty minutes or so in the sun is enough and you certainly should not be staying in the sun and burning. I think there was probably too much pushing of applying sunblock and applying it as soon as you went out in the sun, so this could have caused deficiency. In the autumn and winter we probably need supplements to avoid deficiency because we do not get enough sun. The amount we need seems to be open to discussion but I think the 400 iu that orthodox medicine says we need is underestimated. I have been taking 4,000 iu for a long time and I take Solgar softgel supplements. Sometimes I may take a day off in the week. I do try to get a little sunshine but I am very cautious about not staying too long in the sun because I burn easily.
I see there is quite a bit about vitamin D in the latest Chris Woollams email. I have read it through once but I need to read it again. I do believe what Chris Woollams says. I have been following him now for fifteen years. I find that doctors are very negative about vitamin supplements in general, but I make up my own mind and do what I think. I was congratulated, when going through treatment, and had my vitamin D level tested, on my vitamin D level. I have not had it done since.
I do think that vitamin D deficiency is probably contributing to being very ill with coronavirus.
Like you, I do not understand why people keep starting new threads. I do not understand why on the TNBC forum they do not do a bit of reading and investigation on the existing threads before creating new ones. Most of the answers are already on the two main threads. I did see your post on the thread about ports. I decided not to post there and just put my own experience with a port on our thread. Really, newly-diagnosed patients should be more adventurous in questioning their own oncologist. We all have different experiences and that is all we can relate. We are not supposed to give advice. With breast cancer, I think it is best to keep the whole picture, to relate our own experiences, to give tips on what helped us to cope and above all to give support and encouragement. It is prudent not to be talked into anything until you are fully informed. I was always impressed with Peter (of PeterandLiz) posting on behalf of his wife, and who read this thread of ours from the beginning. He sometimes pops in now and again and like you he comes from Norfolk.
I do hope everything is going to improve with cancer treatment in general. Everything has been shunted aside in favour of dealing with Covid-19 and I think we are going to have to learn to live with it.
I cannot believe what Boris Johnson is getting up to. I do wish we could have another election and also another referendum. We are in an unbelievable mess. I do not think much of the Speaker and I do not think Parliament can function at all without a full chamber.
I was glad to know that your tablet is functioning normally now. I do everything on the laptop (17 inch screen) but I know only the basics and often think the computer has a mind of its own. This morning I was doing the usual email to our gardeners about the work to do next week when the email disappeared before I had finished and was sent to the gardeners!! I had to do it all again because it had disappeared a d then when I looked at my sent box there it was! I then had to send another one to apologise about the confusion!
Take care of yourself, Gill, and I do hope all will go well for you. Best wishes to Michael.
Love.
Sylvia xxxx
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Hi, Adagio
You went through quite an experience, a fist to the groin to stop the blood flow and then stitching and feeling every bit of it, it sounds awful. For the rest of it, it sounds both good and bad, although maybe not too bad because you will possibly have surgery to repair the problem parts. Congratulations on clear arteries, that's a big plus!
I would ask the Doctor about the heart murmur and whether it contributed to this and I would like to know the answer too. I would also like to know if chemotherapy aided in developing this? For me and I think all of us here, we had a heart test before chemo to see if we would be able to have the Adriamycin drug in our cocktail. I was not offered a heart test after finishing chemo though, because the Doctor said I had no symptoms at that time.
Good luck with your computer shopping, I hope you find what you like.
I hope your family is all well too, it's such a strange world we are living in these days. I think fondly of when I was in Italy, and I think now Americans are still banned from Italy. Not sure, but I'm not ready to take the travel plunge anyway.
Take care, and I hope you have a good, productive cardiologist visit.
Talk soon, love, Mary
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Hello Sylvia,
Sorry to here about Raymond but glad to here he is recovering well.
Its been just over 9 years since Liz was diagnosed.
I do still look at every post on here but only read a few.
When ever Liz gets aches and pains I never think "it could be cancer". Its something that happened in the past and has been cured!
Mainly due to triple negative coming back very quickly if it is to return and very rarely returns after 5 years. Liz even says its not something she thinks about despite all her aches and pains.
I can fully understand why people do not carry on posting after the first year.
Liz is still in a small cancer group on Facebook and has become very good friends with 3 other members. Mainly because 2 of them has bought motor homes so she has something in common to talk about.
Liz is waiting to have her Gallbladder removed and is 40th on the list when they start routine operations again.
Liz had a knee operation a couple of years ago but it is no better and can only walk about a mile before it starts to click and lock up. We go for a walk most nights around midnight.
We do still go out riding our electric bikes and Liz has no trouble biking 10 miles as they are so much easier to ride.
Gill,
Buying the electric bikes was the best purchase we have ever made. They will change your life.
We only had one night away in the motor home earlier this year at Cromer so we decided to sell it a few weeks ago and buy another one. I am hoping to win one on Ebay this evening, Its near Aberdeen so I will fly or get a train to collect it. we have missed going to Europe this year in the motor home. I would not have a problem going but Liz has said no. I'm still hoping if we win the new motor home we can have 2 weeks in the south of France in October.
Take care
Peter
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Hello PeterandLiz,
What a lovely surprise to hear from you. I shall reply in more details later.
Love.
Sylvia xxxx
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Hello Peter,
I was really glad to find your post and to catch up on all your news.
Thank you for your kind words about Raymond. We have had a really difficult few months.
Please give our congratulations to Liz on going over 9 years since diagnosis. It is good that she is living a normal life and that she has put cancer out of her thoughts. It is very important that after treatment is finished we get on with a normal life and live every day to the full.
I do hope that you are well and I know that you will be making your life enjoyable and enriching.
I was interested to know that Liz is still in a small cancer group on Facebook and has become very good friends with three members. If you have interests in common it makes it all worthwhile. Our group here is quite small and I really feel that I have got to know them and I do care about them.
I can understand that people want to move on after finishing treatment and recovering. It is nice when they let us know this and we can wish them all the best. We do have people popping in to say hello when they are celebrating an anniversary since diagnosis and let us know they are well and living life to the full.
I do hope all will go well for Liz with her gall bladder operation and I do hope that being 40th on the list will not mean she has to wait too long. Everything has become complicated with the Covid-19 virus.
I was sorry to read about the after effects of her knee operation. It is good that she carries on with walking, as this can only help. Raymond and I have a walk most days and of course it was essential therapy for him after his major surgery. Tomorrow will mark seven months since the surgery and he does walk normally.
I was intrigued that you and Liz go for walks most nights around midnight. It sounds romantic to me, but Raymond says it could be eerie. With Covid-19 and social distancing, it would seem a very safe time to walk. Are you in a country setting? I do find the sound of owls a bit eerie, but do not hear them much here, except for one in one of the trees. Do you see any bats? I watched a programme about thousands of bats in a particular part of Australia and did find them strange and a bit disconcerting.
I think that electric bikes are becoming very popular with people here in Exmouth and they are a good way of getting around. I am sure Gill will look into this at some point.
I do remember how much you enjoyed your motorhome and all the travelling that you did in it. I do hope you manage to win a new one on Ebay this evening. Let us know how you get on. I do hope that you will manage to have some time in the south of France, if not in October, at some point in the near future.
I do hope all is well with your son.
That is about all for today and again many, many thanks for popping in. you will always stand out in my mind because of the way you read the thread from the beginning and because of your posts about chocolate fountains!
Best wishes, take care and stay safe.
Sylvia
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Hello Kath,
I was thinking about you and wondering if you have had your breast cancer check up. I was also wondering whether you can give us any information about the strain of flu and contents of the vaccination that is being delivered in Australia?
People here in Exmouth have been telling me they have been contacted for their flu vaccinations for this year. They do not seem to have any information about what is in them.
I do hope work is not too hectic.
Here in the UK we seem to be getting more cases of Covid-19, so many that certain restrictions have been brought in again. It is all very worrying.
What is going on in your neck of the woods?
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I do hope you have all had a good relaxing weekend, whatever country you are in.
In the UK we are not getting encouraging news about Covid-19 and I do wonder where we are going.
It looks as though flu vaccinations have begun but I would want more information.
I do hope everything will improve and that all cancer patients will be getting the care and attention that they need.
Best wishes to Mary, Gill, adagio (you will get through this), Kath, HelenLouise, Marias, Jags56 (your country is really going through it with Covid-19. Keep safe). Best wishes to Peter and Liz.
Marias, I saw a news coverage of all the nasty things happening in your country. Please take care of yourself.
In the UK it looks as though we are heading for a hotter than usual period for this time of then year. Once again we need rain!!
Thinking of you all during these difficult times throughout the world.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I agree it is nice to here from old posters that no longer post to know they are still alive and well years after getting cancer. It gives the newly diagnosed hope. For that very reason I read the whole thread from the start so I could see how many people diagnosed 3 years earlier were still alive. Our main concern at the time was our son who was 11. How would he cope if his mother died before he had even left school. Thankfully he is now 20 and everything is good. I also wanted information concerning if or when it comes back what it was going to be like. It was no different to reading a book.
Facebook is different its like you are actually living through the whole cancer journey with the other people so you are part of the story not just reading it. Most people go through there cancer experience with very few friends around them. Partly because people keep away but also because many people feel its a private thing they just need to get through.
Because Facebook is instant if you put a post up "Feeling really s..t today just sitting on the sofa crying" so many of your friends will comment within a few minutes. Where as on here you could put that up in a message and it will be a few hours before anyone reads it and comments back. The problem is it is a lot more upsetting as you see a lot more into peoples lives.
The worst post I have ever seen is a young super fit nurse with a 9 year old daughter. She caught her cancer very early she had a double mastectomy and chemo. After her last chemo she was back in the gym every day. She had a lung scan 3 weeks later and they found it had spread. 6 weeks later she was in an electric reclining chair as she could not get out of a chair by herself. Her last post was a few weeks later of her daughter telling her not to forget her mum. It still makes me cry today.
On a brighter note we live on the outskirts of a very small town and we have fields behind out house. Its an old RAF house. We do get dear in our garden in spring eating the bluebells. We have bats flying above our garden every evening but only small Pipistrelle bats. We also have a lot of red Kites here and sometimes see an eagle that fly's up from the Isle of Wight.
We walk around the housing estate that has been built on the old airfield next to us. Its lovely at that time of night. We both worked on the nightshift years ago and still find it fun staying up late at night just like kids. We also have many owls and skretching foxes. We also see rabbits on the green part of the new housing estate at midnight.
We did win the motor home so I'm flying up to Aberdeen on Thursday to collect it. As I'm one of the vulnerable shielding ones I'm not looking forward to going on a plane as I have no immune system but I have chosen the flight with the most empty seats at the moment.
Taylor is now 20. We often go for walks so he has no problems with his legs. He still sits on the computer most of the day and night but will come out to move stuff around the garden or chop firewood. As long as he is happy we do not care. We plan to start up a motor home hire company in the next few months and he will run that at a later date. He often answers questions we cannot answer on the Chase even though he has had no schooling in the last 6 years we always find it amazing what he has actually learnt by himself. Radical schooling works even though I never thought it would 6 years ago.
No chocolate fountains at the moment but we still supply about 50 a year. Taylor often comes with me and can do them on his own if I ever needed him to. Luckily he's not into drinking, smoking or girls he is far to lazy for that.
Peter
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Hello Peter and Liz,
Thank you for your most interesting post. I have things to do this morning, but I hope to be able to answer later on today. I do remember what you posted about your son and I am so glad all is well with him. How the years fly by!
Congratulations on winning the motorhome.
Best wishes.
Sylvia
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Hello Sylvia,
You've put an awful lot of work into the thread over the weekend. Like you, I wish we had more people both old and new dropping in. I often wonder how Flora's mother is getting on I also wonder where cocooncat disappeared to. She appeared on other threads for a short while, but then disappeared completely. I remember that she'd had a local recurrence.
My tablet has now fully recovered from its tantrum. Yes, computers do have minds of their own. Mine has been known to change the format of emails, making new paragraphs in the middle of a sentence or even removing paragraphs altogether. It's also sent messages before I've finished writing them.
My GP thinks the burning pains may stem from a problem in my spine and wants to rule out mets before anything else. She's marked the referral as urgent so we shall see. The mri will be with contrast. I've never had one before and only hope that I can stay perfectly still for 30 minutes.
I agree that we should question our surgeon and oncologist. However, staff/time shortages make this very difficult in many hospitals. I'd done a lot of research on metaplastic cancer and would have liked to have had more time to discuss some of the more worrying findings. My surgeon, (not the one who operated), has treated metaplastic cancer before, but as it was in his old hospital, he left before he was able to assess the longer term results.
Vitamin D is essential and it's the one supplement that I'm very keen on taking. My daughter allows my grandchildren to play outside for half an hour before covering them with sunscreen. It's interesting that Covid has raised the profile of vitamin D. Like all emergency health situations, the vast amount of research being undertaken will be useful for many other areas of health, it's an ill wind..... However, it seems that many cancer charities are closing as a direct result of Coronavirus and according to an article I read in the Guardian in July, this is having a serious impact on funding for cancer research. Cancer patients are probably the biggest losers of the pandemic and it seems that it's nowhere near over. A no deal brexit on top could be a disaster for patients both present and future.
It's another lovely sunny day in Norfolk and I should be out doing some tidying up in the garden.
I hope you and Raymond have already had your walk as it's going to be far too hot later on.
Love,
Gill xxx
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Hello everyone,
Just a few pictures from our grounds to cheer you up on a Monday morning.
Love to all
Sylvia xxxx
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Hello Peter,
I'm seriously considering an electric bike and did some research yesterday.
It's annoying that Liz's knee surgery has failed. So many people have the same experience. When I worked directly with older patients, several had gone through knee surgery on both knees - a couple of years apart. I was surprised that it was common for one knee surgery to be a complete success while surgery on the second knee failed.
Midnight walks in the countryside are excellent for observing wildlife. I'm not a fan of bats, but there's plenty of other creatures to see and hear. It's completely dark in my corner of South Norfolk so good for stargazing too.
Keep well and hope you and Liz will be off travelling again very soon.
Gill
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Hi Gill,
Liz's knee operation was because she had damaged her cartilage so its something that cannot be repaired but they can sometimes remove the damaged part. It was not a success and her knee starts to lock up while walking when she walks about a mile.
We often go on a 10 mile bike ride and have managed 24 miles at lake Annecy once.
Halfords in Norwich at the bottom of Grapes hill next to the river Wensum will allow you to test ride the bikes for an hour for free. You can ride along the river for miles. Liz and I picked out 2 bikes we wanted to test. We paid £1 each on a credit card when we took the bikes and they returned it when we came back with the bikes. There was no hard sell for us to buy afterwards. We went back 2 weeks later and bought one of the bikes for Liz. She bought a ladies old fashioned bike for £800. what ever bike you buy make sure you get one with front suspension. We take our motorhome to Wroxham and stay next to the bridge in the centre and ride our bikes up to the next village with the old fashioned paddle steamer and the house which is on its side because its falling into the river. I bought my bike 6 months later new it should have been £1200 in Halfords. I got mine off a private seller on Ebay same bike still new for £600 but had to drive to the other side of London to collect it.
They are the best things we have ever bought. We do not drink or smoke so the only thing we do while away in the motorhome is ride our bikes.
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