Calling all triple negative breast cancer patients in the UK
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Hello Gill,
Thank you for your post.
I do understand the feeling of being snowed under and catching up on things.
I do get more and more horrified about the way cancer treatment is going or rather is not going! I do think patients are being treated with contempt and I do not blame the front line workers but I do blame the system. The NHS is simply not working. It was already suffering from years and years of neglect by the Tory governments through lack of funding and lack of staff and Covid-19 has just about finished it. I think the original NHS of 1948 was fine for the country we were at the time, but it is not adequate for the over-populated and technical country that we now live in.
I was interested to know that you had been told that the unit had been transferred to the private Spire hospital and there no longer any Saturday treatments. You have a right to know why you were not informed.
One of my friends here told me a couple of days ago that her annual mammogram had also taken place at the private hospital, the Nuffield, in Exeter. It is right opposite the NHS Royal Deven and Exeter hospital.
Another very elderly friend who has BUPA insurance at the private hospital in Bournemouth has had trouble with appointments there. I suppose the private hospitals are now having lots of treatments off loaded from the NHS. I do not think this will ever get sorted out. All the patients can do is insist on paperwork for everything.
It just goes to show how many lies we are being told by the government. I do not believe that cancer services have now returned to normal. I think you have the perfect word to describe the present situation – CHAOS!
I have been watching Boris very carefully and I can see how he is now setting up a situation with the coronavirus to blame others for all the inadequacy of his government and especially him. First of all it was work at home and now it is get back to work, then it was no masks now it is mask yourself up, not to mention stay at home to keep safe and now it is do not stay home, it is better to be out in the open to keep the virus at bay. This morning I watched a repeat of Dateline London and thought Steve Richards summed it all up perfectly. I picked up on the fact that Boris does not really listen to anything most of the time.
As for Brexit, I think people voted for Brexit have been duped. There will be no real control of immigration and we are under the thumb of Donald Trump.
I do hope we shall hear back from Borolass.
I do hope that you have managed to have a bit of relaxation.
We had a little drop of rain but not enough. I understand from a friend that Exmouth beach has been packed. I do hope they have opened the public toilets now. They must be made a legal requirement.
Raymond and I are staying away from the beach and the town.
That is about all for today.
Love.
Sylvia xxxx
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Hello adagio,
Thank you for your latest post.
I was so glad to read that there is no metastasis and that the lung infection on the left has resolved. I do not really understand what "crushed glass opacity in the right lung" means. Are the problems in the lungs connected to your radiotherapy treatment? What do you think will be the treatment for "calcification of the aortic valve"? You said that this was not mentioned on the previous scan, so does this mean that this has happened since then?
I do hope that you will be able to get an appointment soon with your GP. Here in England at least, it is not that easy to get an appointment and appointments are not at all the same as they were before Covid-19. A lot are just telephone and apparently video interviews. If you do get to the surgery, you have to get an appointment in advance, ring the doorbell at the surgery, wear a mask and be ushered in to an empty surgery to be seen. I do not know if you can even be seen unless you need an injection or something similar.
My arm has almost healed but it has taken two weeks to do so. I have been treating it with aloe vera gel and especially Vaseline. They have worked wonders.
Raymond is slowly making progress, but is has not been easy. The oedema in his leg has been the most problematic. It is mainly the foot that is swollen along with a stiff swollen ankle. I think the doctors have kept him on diuretics for too long and I decided some weeks ago that this swelling was probably lymphoedema, just like I have in my right arm. I remember when I read that book Let's Talk Lymphoedema, written by the foremost expert on lymphoedema, that GPs knew next to nothing about lymphoedema. I remembered how close the lymph system is to the blood system and I figured the lymph had been damaged during Raymond's surgery to harvest the big saphenous vein to use as a bypass to blocked arteries. A week or so ago we had a home visit from our podiatrist and she looked at Raymond's foot and said she thought it was lymphoedema. We feel there is no point in seeing the GP about it. I know from my own experience that you need to do manual lymph massage, wear compression stockings, and exercise. I was told there was no cure for lymphoedema so we shall just have to see how Raymond goes. My lymphoedema is very mild and of course was caused by surgery, the taxane drugs and probably radiotherapy. I have seen breast cancer survivors with really bad arms and hands due to breast cancer treatment and the threads on bc.org attest to that.
What is the situation now with Covid-19 in Canada in general and in British Columbia in particular?
I hope all is well with your husband.
Please keep in touch.
Love.
Sylvia xxxx
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Hello Kath,
It was very nice to her from you and thank you very much for those awe-inspiring photographs. We need photographs like those to cheer us up and perhaps think about all the damage that human beings are doing to this planet.
It is always so interesting to read the contents of your posts. I cannot begin to imagine what it is like doing your work!
What do you think has caused this latest surge in cases in Australia. Do you think that people have not been doing the social distancing or as I call it physical distancing? I have been told that swabbing is very unpleasant and can cause damage if not done properly. What do you say? I do not think that many ordinary people here in the UK have been tested through swabbing. There is still a lot of muttering about blood tests and looking for antibodies, but I have no confidence in these. Here in the UK it is difficult to know how successful the drive in clinics have been but it seems to be they are in far away places! I think you can only get tested here if you are showing symptoms. The idea now is to have local lock-downs and to have them enforced by local councils.
I do hope all goes well with your September appointments and it is good that keeping busy is keeping your thoughts elsewhere. We all know the anxiety of waiting for appointments and waiting for test results.
Please keep in touch and keep us informed.
Love.
Sylvia xxxx
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Hello Sylvia,
We seem to have a warm, dry week ahead of us in Norwich, though it might rain on Thursday. We did have some heavy rain two nights ago, but not really enough to make up for the weeks of dry weather. Our stream is very low and the ditches are dry.
My friend who is having difficulty getting her mammogram results in writing has IDC triple negative. She had a lumpectomy followed by chemotherapy and radiotherapy then went for her first mammogram post treatment and was diagnosed with a primary triple negative on the other side. She has spoken to her GP asking her if she has the mammogram results and the GP doesn't have them either! You and Raymond both seem to have had your own problems with NHS notes. It's very worrying because our records are assumed to be accurate by the medics when we attend hospital appointments for treatment. Hospital IT systems are very complicated and time consuming - I wonder if this explains why so many of our notes are incomplete? It doesn't explain why some of our medical notes are plain wrong though.
This morning I read that a serious second wave of Covid would ruin the NHS. I very much doubt if Johnson will shed any tears if this happens. I don't know if you watched PMQs last Wednesday, Johnson resorted to snide underhand comments about Keir Starmer's legal career and failed to answer a single question. His new mantra seems to be 'build, build, build, jobs, jobs, jobs'. I suppose it makes a change from 'get brexit done', 'forty new hospitals', 'oven ready' and other silly nursery type catchy phrases.
I think that damage to Raymond's lymph system sounds like a very plausible explanation for his continuing problem. I do think that patients should have more aftercare following heart surgery, surely surgeons ought to be interested in seeing the results of their work? Too little time I suppose.The aim should be to minimise the deficits of surgery by improving techniques perhaps. Living with a swollen foot is difficult, as I know. Mine has greatly reduced, but long walks and shoe buying are problematic during the warmer months.
It was worrying to see such a large hospital, usually brimming over with patients, visitors and staff, so quiet on Saturday. How can services ever catch up? Sadly, I think they never will. This will be the situation in all major hospitals I expect. Why on earth were the Nightingale hospitals built if they weren't to be used and where were the extra staff coming from? How can a Government be so detached from reality?
BBC's 'Talking Heads' is excellent, thank you for suggesting that I watch it. Martin Freeman excelled, as did my favourites Harriet Walter and Imelda Staunton. I've been working my way through Poirot on ITV before they disappear into the new subscription system. The advertisements are annoying, to say the least, but David Suchet is too good to miss.
I have bought some fabric masks, close woven cotton with a pocket for a filter, I use folded kitchen paper. I don't find masks easy to wear in the hot weather, but at least mine are reusable and won't end up in landfill for hundreds of years. I've read that mask disposal has become a serious environmental problem already. My thoughts are with patients who need to spend several hours having chemotherapy. Keeping a mask on while feeling unwell or frightened perhaps, must be difficult. I'm hard of hearing so Michael has to relay everything anyone says to me by shouting in my ear!
Keep well and look after that burn, I'd forgotten all about it until Adagio's comment.
Much love,
Gill xxx
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Hello Adagio,
Very good news from your scan. Such a long worrying wait though. I will do some research about crushed glass opacity in the lung. You definitely need to talk to your doctor and find out the details. Peace of mind is everything! Do you know what your lung infection was caused by? It went on for a long time. Like Sylvia, I would be interested to understand what treatment there is for calcification of the aortic valve. It seems to me that the more scans/tests we have, the more problems with our not quite so young bodies are discovered. That's a good thing, I know, but something to add to the list........
It appears that I've been fitted in for my Zoledronic acid infusion on Wednesday morning. I'm grateful of course and will go, but I also have a hair appointment on Wednesday! Hair appointments are rare as hens' teeth here following lockdown. Priorities!
Keep safe and well and let us know how you are getting on.
Love,
Gill xxx
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Hello Kath,
Good to hear that you're well and coping (although very overworked), with the outbreaks of Covid. I'm so sorry, Australia took a very sensible, well organised approach to the pandemic and I had hoped that infections would remain extremely low until the virus either disappeared or weakened sufficiently to no longer be a significant threat.
The photos are amazing and quite different to anything we could see here. My fingers are crossed that your mammogram will be clear.
Hoping that both you and your family stay well and healthy.
Love,
Gill xxx
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Hello Sylvia,
Just a very quick post, House of Commons have voted against Clause 17 which was intended to protect the NHS from foreign control. I'll have a closer look at what this means later on.
Keep well,
Gill xxx
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Hello all,
I don’t post much here, but am a faithful visitor to the thread. I was curious what is Zoledronic acid infusion?
Gill had mentioned in one of her last post.
Paula
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Hi Paula,
Good to hear from you.
According to research by Guy's and St Thomas's Hospital, Zoledronic acid infusions following chemotherapy and radiotherapy improve outcomes for patients with early breast cancer. It also helps to prevent recurrence of breast cancer in the bones. Zoledronic acid in tablet form is generally offered to patients, with osteoporosis as it strengthens bones. Bones can become weaker after chemotherapy, particularly in post menopausal women, so I'm happy to take it.
Keep well.
Gill xxx
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Thank you for your answer to my question, Gill. My MO hasn’t suggested that I take this.
Paula
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Hello Gill,
Thank you for your latest post.
It sounds as though your friend is being really messed around, which is so unacceptable.
I do believe very strongly that we have to be on guard for ourselves as patients and keep a careful check on everything. I have friends and relatives who do not bother to chase their results after tests etc. They always say to me that they have not heard anything back so everything must be alright. I tell them that is a big assumption. If they are given vague results for blood pressure, blood tests or even being weighed, they do not ask for precise numbers. For cholesterol they do not ask for HDL, LDL & triglycerides. I do not function like that!
I did not watch PMQs on Wednesday but I shall try to watch it on BBC iplayer in the next few days. I did see a little bit on the news and thought that he was getting worse and worse. I see, as well, that because he cannot get the better of Keir Starmer he keeps bringing up Jeremy Corbyn's name. What a mess we are in with Donald Trump and Boris Johnson.
I think it is highly likely that another wave of coronavirus would finish off the NHS. I think it is going to be taken over by the Americans.
I do hope that Raymond's foot and ankle will improve with time, but I do have my doubts. It will be six months on August 14th since he had his surgery in London. We shall see how he is then and see what we can do. I know that with lymphoedema it is mainly doing manual lymph massage and wearing compression stockings.
I see that now we are in more confusion over face covering as they call it. It is all very confusing for ordinary people as the situation is never black or white. With the face covering there are too many exceptions. Are we now going to have a police officer on every shop door?!
I am very concerned about cancer patients and I cannot see the hospitals ever getting back to normal functioning.
Did you see the programme Being Beethoven on BBC4? I missed the last part but hope to see it sometime soon. I have also been watching a programme about Murdoch, the newspaper tycoon. Have you been watching it?
I am still waiting for rain.
I am starting to worry once again about Mary. She has always been such a strong contributor to the thread so I just hope that she is alright and has not decided to leave us.
That is about all for now. I have received the latest email from Chris Woollams but do not know what to make of some of it. Have you read any of it?
Take care, Gill and let us hope that this Tory government will soon be gone.
Love.
Sylvia xxxx
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Hello Jags56,
I just wanted to say hello and to make sure you are alright and safe.
I do hope the coronavirus situation will improve in your country.
Take care.
Love.
Sylvia xxxx
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Hello Sylvia
Thankyou for caring and remembering. I am fine here. The situation is not good but hope that it will end soon and everything will be back to normal.
Hope all are fine .
Love
Jags
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Hello Jags,
It's a relief to hear that you're well. I've been reading about the high Covid infection rate in New Delhi and wondered if you and your family were able to stay safe. I too hope for a return to normality, but I think we have a long way to go before that happens.
Best wishes,
Gill xxx
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Hello Sylvia,
You seem to be having warmer weather down in Exmouth than we've had in Norfolk this week if the beach webcam is anything to go by. We still need more rain here if water shortages are to be avoided.
I was wondering if Mary had decided to call in as an occasional visitor rather than a regular. I miss her interesting posts and the snapshots she gave us of the American insurance based health system. It could be that the effect of the tick bite and training her new friend are just too exhausting at the moment. Mary did mention the humid weather which won't help with her tiredness.
I often wonder how Flora's mother is getting on. Maryjv hasn't appeared on any threads recently so I'm guessing that she's fully recovered and getting on with life, which is always good news especially when young families are involved. I visited my hairdresser earlier in the week for my first real haircut and she told me that two of the older stylists had been diagnosed with breast cancer. I don't know which type. Breast cancer is such a blight on the lives of women and with it becoming so common, people tend to think it's curable and a bit of a walk in the park compared with other cancers. This is an endless source of frustration, for me at least!
My Zoledronic acid infusion was finally done on Wednesday morning. The nurse apologised profusely for Saturday's mix up, though it was an admin error and it was rectified very quickly. It was a strange experience, but extremely efficient and well organised. I had to wait in the car park until my nurse phoned me. There was a nurse on the door who asked a lot of questions about if I'd had a Covid test, if I'd had contact with anyone who had Covid and if I had a cough, felt unwell etc. Another nurse took my temperature and handed me over to a chemotherapy nurse. The infusion took place in one of the en suite private rooms with room for only two patients and - best of all - it had a large window that was open. The chemotherapy unit at the main hospital is a huge white windowless room, and not at all relaxing. So, all in all, a positive experience. The nurse told me that there was no backlog of patients and only one member of staff had tested positive for coronavirus.
I seems that only time will tell if Raymond's foot will improve. I am prescribed compression stockings for my left foot, very difficult to get on and hot in Summer. I don't wear one very often these days as the swelling has gone down as much as it's going to and it doesn't affect my walking at all. In cooler weather it isn't even noticeable. I hope Raymond will experience the same eventually.
I do have Chris Woolams' latest offering, but haven't had time to look at it yet. I'll try to catch up with the Murdoch television programme, though it will no doubt cause a rise in blood pressure. I have been watching with interest, the slowly changing political stance of the Tory supporting press. Perhaps Mr. Murdoch is disillusioned with the Johnson/Cummings performance? I think the whole world must be tuning into PMQs, it is such a disgrace. Keir Starmer does well to stay cool. We live in interesting times!
Keep well Sylvia.
Love,
Gill xxx
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Hello Gill
Thanks for your concern. I am fine and trying to keep safe. My husband is now retired so stays at home . We do not go out unless we really need to.
I am also concerned about Mary . Hope she is well and enjoying with her little puppy.
I am thankful for this thread for all the support knowledge and caring friends.
Love
Jags
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Hello everyone,
I've just been reading something the moderators have recently posted on the 'Clinical Trials, Research News, Podcasts and Study Results' thread. 'Breaking Research News' - it might be worth looking at.
Enjoy the rest of your weekend.
Gill x
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Hello Gill,
Thank you for your post.
I think Exmouth is probably warmer than Norfolk. Apparently Exmouth has its own weather pattern and the rain often misses us. We have had showers during the weekend but nothing serious enough to make up all the hot dry weather and we have had lots of strong winds which soon dry out the ground.
I shall really miss Mary if she stops being a regular poster as she has been a strong and interesting poster for some time. I do hope she is not unwell and I do hope that the puppy is not wearing her out or restricting her life too much. I do know that tick bites can undermine a person's health or that is what I have heard about a friend of one of my cousins who has suffered with Lyme disease for many years. Mary loves to travel, so I am sure she is missing that.
Like you, I have thoughts of people who no longer post and about whose health I wonder. It would be nice to hear from Flora to have news of her mother and also to hear from Maryjv. It is easy to be a viewer but being a poster means dedication and loyalty and a willingness to give some of your time.
I was sorry to read that two of the older stylists had been diagnosed with breast cancer and I do hope they will be alright. With the coronavirus it is a very bad time to have to start on a cancer journey. It would be interesting to find out what kind of breast cancer they have and what their tumour status is. I agree that breast cancer is such a blight on the lives of women and it is so widespread and common that people may not realise how serious it is and how it is a life sentence. It is certainly not curable and not a walk in the park. No cancer is a walk in the park. I do understand the source of frustration that it is for you.
You must be relieved to have had the zolendronic infusion and I do hope you will not have any side effects. It was not something that I was ever willing to have. I steer clear of bisphosphonates and medication in general.
I think the procedure you went through to get the infusion done is the normal procedure now for many appointments. I certainly went through that for my dental appointment and Raymond recently went through it for a similar dental appointment. It is all very strange from normal procedures at our dentist's offices.
As for Raymond's lymphoedema we shall have to do what we can. With mine I discharged myself from the lymphoedema clinic at the hospital as I found it a waste of time. I can manage it myself when it bothers me.
I do think that consultants should explain more openly all the different possible side effects of breast cancer treatment. We have a right to know about the high likelihood of lymphoedema, neuropathy, aches and pains for ever, etc. Having read the article by the Moderators about heart disease that should all be out in the open as well. I was told about the possibility of heart problems but not in any detailed way. I was not told about having appointments for this matter after treatment and for the physical check ups I had with my oncologist for ten years heart problems were never mentioned.
I was told that epirubicin (Ellence) and doxorubicin (Adriamycin) could cause heart problems and that I was being given epirubicin because it was less toxic than doxorubicin. I really think they were both toxic. I did have an ECG before and after treatment and was told that all was fine.
It was about the same with the taxane drugs. I had docetaxel (Taxotere) instead of paclitaxel (Taxol) and I think I was probably told the same, that the one I was having was less harmful than the other. Who knows? I have no idea what state my heart is in fifteen years on since diagnosis, but I do know that my blood pressure is not as good as before breast cancer.
I shall talk more about the article from the Moderators in another post.
I did catch up with the last PMQs and thought that Boris Johnson was disgraceful. He is now going to set himself up as the health guru! I say to people subscribe to Cancer Active and Chris Woollams, follow the Mediterranean/rainbow diet and buy the book. Banning advertising of junk foods before 9pm will not be any good. Does that mean that adults viewing after nine is alright and that junk food is fine for them! People need to get exercising and eat basic whole food. Calorie counting is not always useful and is boring.
I also caught up with Being Beethoven but have not yet caught up with the Murdoch story.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hi, Sylvia
I hope your arm is alright, burns are nasty. I am plagued by a few things over the summer, for one being some strange pink spots on my lower legs that are a little bit crusty. I made an appointment with the dermatologist, that was a long wait, and she pronounced them to be a form of keratosis. Porokeratosis, I think. not cancerous, but could be. However, a drug in the form of a cream was found a year ago and it is successful. So there's that.
My forearms and my lower legs now have skin that bruises and cuts easily. So the puppy was a trial in that respect. He is becoming more well-mannered so the injuries I have are healing. It is still annoying that a bump on a doorjam causes a dark bruise. Dermatologist said it's caused by thin, dry skin caused by way too much sun in my life. And also that I'm thin, and don't have protective fat in these areas
The upshot of all this is that I have worn long sleeves whenever I go out, and pants well below the knee. Otherwise there would be way too many questions. I am also supposed to have another blood test concerning the RMSTF, to see if it's negative. I am still quite tired by late afternoon, although I think I feel a bit better. People have told me it takes months to feel normal again.
Sorry I have been absent so long, my days go by so fast it's a wonder.
I haven't heard much about BC lately, Covid-19 is all that's talked about for the most part. We in my area are seeing more positive cases, but I think it's to be expected when summer came and people were tired of being at home. I do know a man about 79 who has been hospitalized with complications from Covid, the truth still is if we're older we have to be more careful. I think shutting down businesses again is wrong, I don't think people are going to abide with it. People around here want to be responsible for their own lives, and if we have to live with Covid going on I think that's what people are going to do.l am not sure what will happen when it's time for school to start. We here are leaning towards opening up, it is a complicated process for those who have to make decisions.
It seems to me that those who are calling for SHUTDOWN again are wrong, people do not want to lose their businesses, and don't want to sit at home again. There will be probably be a big fight coming over this. I am also totally disgusted by what is going on in some of our cities, I don't think the violent rioting that is going on has anything to do with George Floyd. Not anymore. It is distressing when I think of all the things going on right now.
So I do think I'm glad to have my puppy, he is a definite distraction and he makes me laugh. And makes me angry when he attacks the toilet paper and my shoes!
I do hope all of you are well, and I will try to get back very soon and respond to Gill. And I will have to look up what's going on with the Moderators, and changes? I don't like changes! Kath, those are beautiful pictures, thank you!
Talk to you again soon, greetings to Raymond and love,
Mary
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Hello Sylvia,
Thank you for another interesting post, I'll try to reply before the weekend. Too much to do and not enough time again!
Mary, very happy to hear from you. You really are going through the wars again. Please don't worry about posting to me until you're fully back to your old self, I can always look in on your posts to Sylvia.
Love to you both,
Gill xxx
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Hello Mary,
It was so nice to see you back on the thread.
I was so sorry to read that you are having a difficult time what with one thing and the other.
I think that keratoses are very common, especially on the face and lower legs. I am not sure how they treat them here under the NHS, but I think that sometimes they try to cut them out. A cream to put on them sounds like a very good idea.
As for bruises and cuts, that seems to happen a lot as you age and they both take a long time to heal. Are you on any medication that causes bruising? Over the years here, where I live, I have seen very elderly people with hands and arms turning a bluish-black colour and bleeding from being on anticoagulants such as warfarin and the newer drug that have replaced it. There is also an anti-platelet drug called clopidogrel that causes bleeding. I would think aspirin does the same.
As for cuts, they do seem to take ages to heal.
You asked about my burn. It has taken ages to heal and has still not completely disappeared. I found the best thing to heal it has been simple Vaseline. I did buy some aloe vera, much more expensive than Vaseline, but not as effective. I do remember that when I had the mole problem and two surgeries to remove it, that I was told to use Vaseline to heal everything.
I think we all know that too much sun is not good for us. I also think that we need to keep our skin hydrated.
I can understand that you have been wearing long sleeves. I try to do that because I am very prone to getting bitten, and it has been very bad this year. I also burn very easily in the sun because of my fair skin, so I need to be careful. I have not worked in the grounds so much this year because of getting bites and also because of feeling more weary than usual. I do feel much better when I am outside.
I do hope you have good news from your RMSTF.
I was glad to know that you think you are feeling better. Make sure you take good care of yourself.
I have been taking 15 mg of zinc tablets for a few weeks and I think it has helped with the burn.
I do hope you will be able to stay with us but of course I do understand that you need your rest and breaks. You have been such a strong and interesting poster on the thread and you know how much I have appreciated that.
You are right about not hearing much about breast cancer these days, but everything has taken a back seat to Covid-19. I think there has been too much talk and I know that for cancer patients in the UK this has not been good. Covid-19 is something we are going to have to live with. There was a programme on BBC1 on Panorama about this coronavirus but it is all a bit of a muddle. Everyone is blaming everyone else, but are not making much progress. Our government has not had a clue about dealing with the virus. Their main concern has been to try to shield the NHS and hide up the fact that ten years of austerity has almost brought it to its knees. In order to save money the government did not stock up on equipment etc. even though they knew we could be facing an epidemic of something.
The state of the economy here is dire and we are going to have years and years of austerity and massive unemployment. Watch this space!
I would be interested to know what you think about the article that the Moderators posted recently. It is all about how breast cancer survivors are more likely to have heart disease problems than those who have not had breast cancer and this makes them more susceptible to recurrence and metastases. I think it is an article that will frighten cancer patients and cause more anxiety. There is already enough of that around and living with the knowledge that the cancer can come back any time and can spread. There is the idea of survivorship care after treatment for life with regular visits to doctors and hospitals, scans and probably more and more medication. I would not want that, but that is my personal view. I was so glad to be free of of treatment and not to be on drugs for years. It seems to me that everyone I know, whatever they have or had, are on more and more and drugs and visits to doctors etc. I am probably the only person in my apartment complex that is not picking up prescriptions and I shall keep it that way. Raymond has reduced his drugs from seven to three and we shall work on that a bit more.
I was glad to read that you are glad to have your puppy and to know he is a bit better behaved. Do not let him wear you out!
I have not really noticed any great changes from the Moderators with the functioning of the forum. If you notice any please let me know.
I have tried to contact Hanieh (honeytagh) but with no success. We have not heard from Marias in quite a while. It has been mainly Gill and me, Kath and Helenlouise, with adagio, and Jags56 popping in. We get some first time posters who ask a lot of questions, we give them a lot of information but get no feedback. There are a lot more views than posts.
Thinking of you and sending all my love and best wishes (from Raymond as well).
Sylvia xxxx
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Hello Gill,
Thank you for your post. I look forward to hearing from you. Why, oh why, are we so busy?! We should be having more leisure time!
Love.
Sylvia xxxx
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Hello Sylvia,
It's wonderful to have Mary drop in and tell us what's been happening. Tick bites can be extremely unpleasant with a long term impact on health. Two people in the village have been bitten as a result of their dogs and cats bring them into the house on their fur. I've been bitten, but with no after effects. The Rocky Mountain tick that found Mary seems to be particularly nasty. Like you, I'm very prone to being attacked by any insect that happens to be passing. Horse flies are a particular pest here and their bites swell up to an enormous size. Michael appears to be fairly immune and most biters give him a wide berth - clearly his blood is much less appetising than mine.
I didn't know that Devon had it's own weather pattern. When living in Ivybridge it was very warm with frequent very light rain, although it could go on for several hours at a time. When we first moved to Norfolk it was noticeably cooler, with plenty of sharp winds. We often have water shortages in Summer, apparently the water bearing underground rock in Norfolk isn't adequate and doesn't store sufficient water in times of low rainfall. Our cottage isn't on mains water as we have our own supply. It hasn't let us down yet and doesn't contain the chemicals in 'normal' tap water.
I wonder how Marias is coping? I do look at what's happening in Colombia and there's never any good news. It's essential that she gets her medication on time, the constant stress she is under must be exhausting.
I noticed that Chris Woollams has written about the use of antioxidants during cancer treatment. I haven't had time to go through it all yet or do the research, but it seems that curcumin actually improves the effectiveness of chemotherapy. My oncologist told me to stop taking both curcumin and vitamin C. I often used turmeric in soups and stews and I stopped cooking with it too, thinking I was improving the chance of my chemotherapy working. Your oncologist seems to have been more enlightened. Of course, supplements are nowhere near as effective as the antioxidants we find in food, but eating is often problematic during chemotherapy. The nausea and damaged taste buds made most food unpalatable to me. I would happily have taken supplements had I been allowed to do so.
Our Prime Minister is now advertising for someone to do his daily briefings for him. This is just one step away from ending the very important live PMQ's. The Speaker is very concerned that democratic processes are being sidestepped, I think John Bercow would have done a lot more than being 'concerned'. How fragile our democracy has become in just one year.
The oncologist at Guy's Hospital did mention that chemotherapy could cause heart damage, but said it was very unusual. My oncologist in Norwich didn't mention it at all, but did send me off for an echo cardiogram before treatment. I have no idea why we are not offered another echocardiogram a year or perhaps two years after chemotherapy has been completed. I shall ask about this if I have my annual check in September.
That's about all for now.
Take good care of yourself and Raymond.
Love,
Gill xxx
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hi all
Hope everyone is doing well? It's been bedlam here and all of the public health units across NSW are helping out with contact tracing for Victoria and the clusters in Sydney. I've just had 2 days on the border swabbing truck drivers as they have to be swabbed every 7 days because they cross so many states. Exhausting business wearing full PPE climbing on to trucks to swab but def not boring!!!!The border check points are crazy and it feels like we are in a post Cold War country .
The weather has been really strange here too for winter. Cold at night but beautiful sunny days that make it feel like Autumn. Great sunsets tho. I've added the most amazing one from the Line of Lode in the middle of Broken Hill. Stay well everyone
Much love
Kat
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Hello Gill,
Thank you for your post dated July 30th.
It was nice to have Mary back on the thread and I do hope she will make a full recovery from everything and feel well enough to get back to regular posting. I know that ticks are a big problem with dogs and I do wonder about domesticating dogs and cats and bringing them inside homes. When I was growing up there were a lot fewer dogs and they always had kennels in th gardens. Cats carry all kinds of things as well. I have read a lot on line about cats and dogs carrying coronaviruses and the experts cannot seem to make up their mind about whether animals pass them to humans or the other way around. It does seem certain that in Wuhan in China the problem came from the 'wet markets' with bats passing the coronavirus to civets and pangolins. We are so overpopulated throughout the world that we are encroaching upon all kinds of wildlife because of chopping down our trees and destroying so many green areas. What a mess humankind is making of the planet and now is so keen to occupy a planet and do the same!
Apparently on Microsoft News this morning there was an item about problems in Holland and Spain with minks on mink farms. It seems the employees had the coronavirus and passed it on to the minks and then the minks have passed it on to employees. I do wonder whether the minks somehow had it first and passed it on to the employees.
People get so excited about foxes and other animals strolling through the towns, but this is not natural.
I also wonder about Marias. I also try to keep up with the news from Colombia and it is never good news. The US seems to have enormous power over South America and this is not right. I suppose Marias will get in touch when she can.
I have not yet read the latest email from Chris Woollams. Sometimes I think there is just too much information to absorb in our everyday life. I believe in keeping my life simple. I eat a simple basic diet and am just amazed when doing our Tesco online order at the number of products available with no nutrition and so much over-processing. It is truly mind-boggling and I cannot see that these products can do anything but harm to our bodies. I shall try to have a look at Chris Woollams' email sometime this week.
When I was going through treatment I did my own thing when it came to nutrition and anything that I thought would be of benefit to me. As you know, I believe that my body belongs to me and nobody else.
I think everything with the present government in the UK is getting worse under Boris Johnson and that he is just a gimmicky Prime Minister and we need someone with gravitas, dignity, and more understanding of ordinary people. I do not want to see a Prime Minister in a hard hat sitting grinning on a motorbike. I think 830 people in the House of Lords is downright disgusting! We do not need 650 MPs in Parliament either. I would like to see a Republic with a Federal system and I certainly do not believe in titles. We now have the latest gimmicky slogan. Hands, face, space!
I heard something on one of the channels recently, which said 'Under Keir Starmer the Labour Party is in safe hands because it is a party ruled by the establishment'. It seems to me we are back under Blairism and will not be going very far.
As for heart disease and chemotherapy, I think it is fairly obvious that it will not be doing our body any good and who knows what will happen to it over the years after we have finished our basic treatment. I think each of us will have to make up our minds whether we want after-treatment survivorship care, but it is certainly not for me.
It is very quiet here today but I would think the seafront is busy. I am just wondering what the new week will bring. If the briefings come back shall we have the pleasure of seeing Dominic Cummings taking over? If he is dictating all of this he should have the courage to make himeslf seen.
I do not think much of the present Speaker of the House. He is letting Boris Johnson get away with too much. Bring back John Bercow!
We are still not getting enough posts but I suppose most patients now have the basic information for their treatment.
Take care.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your post.
I read with great interest your latest post and I can hardly believe how busy you are with this coronavirus! If only we had the same kind of rapid intervention here in the UK. We are still lagging behind in every way. It must be exhausting for you doing all that swabbing. How long does it take to get the results? I do sympathise with you over how exhausting it must be wearing full PPE and climbing onto trucks.
It was interesting to read that you are having strange weather for the winter. Our weather is strange as well and is such a mixture. There was record heat on Friday in some places, but Exmouth was not quite that hot, but still hot and humid. Today it is a lot cooler but we are still lacking rainfall.
Thank you for that awe-inspiring photograph of a sunset.
There is not much more to say. We are all over the place with Covid-19 outbreaks. The main thing for the government is to keep published statistics on cases and deaths as low as possible to make them look good, but I think the public would prefer the truth. We are probably in fifth position now after the US, India, Brazil and Mexico.
Take care, Kath, and make sure you get some rest and stay safe.
Love.
Sylvia xxxx
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Hello Sylvia,
I am a quiet participant here in this thread. I do come and visit almost daily. I’ve said before that it has been a comfort to me to see survivors of this type of breast cancer.
I have recently passed three years since my diagnosis and although I’m living my life fully. (As fully as you can with COVID-19) I am still filled with so much worry about reoccurrence. I wish I had more insight and information that you all have to contribute in my posts. Rather I feel that I just come here for strength to ease my anxiety. In two weeks I have my 6 month appt with my MO and my worry is beginning to well up within me.
I guess I just want you to know how much your’s, Mary’s, Gill’s, Kath’s posts mean to me.
I am a 63 year old woman with a great husband and 3 grown amazing children and 4 beautiful grandchildren (2 who will be turning 1 year old this fall) that I so desperately want to see grow. I know perhaps that sounds rather selfish since I’m 63 and much younger woman are diagnosed with this disease. Just trying to be honest. I love my life with my husband and my two dogs and our daily walks. It just means a lot to me to come here and read your posts.
Paula
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