Calling all triple negative breast cancer patients in the UK
Comments
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Hello adagio/Maureen,
I never really stopped posting on the thread. I did not post as often while Raymond was in hospital for those four weeks because I was too upset and anxious. I am totally devoted to the thread that I created and very proud of it, so it would be difficult to stop. I also like the forum in general and always read through the Active Topics to keep up-to-date. There are a couple of threads there that are good for relaxation. One is about gardening and the other is for quiet moments. There are lots of lovely photographs there.
As for Raymond, he is doing well and it is now eleven weeks post surgery. It will still be a long recovery but he can now walk about two miles.
I was interested to see that you had picked up on what I had said about flu shots. I feel that this season I should try a flu shot because of the dangerous times we are living in. I did have to have a flu shot in 2005 when I started my breast cancer treatment, along with a pneumonia shot. I did not have any flu shots after 2005 until 2017, October, when Raymond and I decided to have them. We had them done at the pharmacy. Yes, I did have the swelling in the right arm and hand where I had had the breast cancer surgery on the right side. It was lymphoedema but not extremely bad. The pharmacist said, when I consulted her later about the flu shot, which had been done in the left arm, that it was probably a flood of antibodies that had caused the swelling because I had not had any flu shots in such a long time. I did get referred back to the hospital to the lymphoedema clinic and had a few appointments but largely managed the lymphoedema on my own. I discharged myself and really have had no problem with lymphoedema in the past couple of years. I do some exercises and massage to keep my arm in trim.
When it comes to actually having the flu shot I may change my mind but I want to protect myself, protect Raymond and make sure that, if and when our government actually gets us all tested for coronavirus that we can both have these tests. At the moment our sill government is making a mess of everything. Have you and your husband, Peter, been tested for the coronavirus?
I do understand why you have never had a flu shot. I have always had reservations. I do not think I really have ever had flu but just really bad colds on rare occasions. I think the older we get the more vulnerable we become. Raymond will have to have check ups at the hosital and the surgery when the lock-down goes away and this will make us more vulnerable.
I was glad to read, in your post to Mary, that your husband, Peter, has made some progress in a year.
I do hope my friend will come home soon from Australia. She is with one of her daughters so will be well looked after. She is probably safer in Australia than here.
Raymond and I always follow any news about Canada.
That is all for now. Keep well, keep safe.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
I think I was very lucky to have an all women team during my breast cancer journey. I found all three of them, the oncologist, the breast cancer surgeon and my breast cancer care nurse treated me with the greatest respect and answered all my questions, of which I asked many. I was very informed when I finally started my treatment after months of delaying and considering all my options. I was so lucky to have found icon magazine on my first visit to the hospital and got to know of Cancer Active. I learned so much from one of the people connected to it, Dr Rosy Daniel and her book that I read, The Cancer Directory (yet another woman!). I also had that homoeopathic treatment, as I have mentioned often, with Dr Elizabeth Thompson, referred to her by my breast cancer consultant and treated for five years, primarily with Iscador. I also saw, privately, a nutritionist connected to icon and Cancer Active. It took me quite a time to make up my mind to go for orthodox treatment. The nutritionist was also a woman! I did have a male GP but I went to his female colleague for an appointment and she diagnosed breast cancer. It was all nearly fifteen years ago now, but it is still all very clear to me.
I was so glad that we on the thread were able to help you during your journey.
I was interested to know that you had read most of last week's Cancer Active email.
I do not know how the problem of sugar and its connection to cancer can be resolved. Sugar is everywhere on the supermarket shelves and people are addicted to it. Putting a tax on sugary drinks is only the tip of the iceberg.
I do hope that what we were told yesterday about opening up now to dealing with cancer patients holds true. We are told that they can now start dealing with appointments and treatment for cancer patients. If this does not happen, the latest information I have is that we could have 18,000 deaths from cancer. I do wonder how many deaths we have from cancer in the UK a year in normal times. So many people seem to be getting diagnosed with it.
Like you I am not very optimistic about when lock-down will come to an end. I am sure that those over 65 will be the last to gain their freedom. As you say, it all depends on what Dominic Cummings decides. I saw that the name of Isaac Livido is appearing again, along with Cummings, he was the person running everything.
I find it odd that Boris Johnson appears back on the scene just before his girlfriend gives birth. He has been the absentee PM for a lot of the time since he was elected leader of the Conservative Party. It would be interesting to know how many days he has missed. He is just a showman with no depth.
I agree that Keir Starmer demolished Dominic Raab last week and this week. Keir Starmer is forensic in his questioning and I think he will demolish Boris Johnson's circus act.
I do wonder exactly what goes on at SAGE.
We are in a mess with the coronavirus and mass testing should have been done months ago. The Conservatives deliberately did not prepare for a pandemic and did not stock up on anything that would be required in such an event. I read one article in which Jeremy Hunt, the former Health Minister, did cuts on stock. How hypocritical of this merry band of privileged individuals to do hand clapping and talk about "our NHS".
It is true that we have not heard from Maryjv about how she is getting on. She will probably turn up but she does post on other threads as well.
We have had some well needed rain for the past few days and it has been welcome news for getting the grounds well watered.
That is about all for today. I have a list of seven things to do so I had better get started.
Out of interest, have you or your husband been able to get tested for the coronavirus? I was wondering about this as I know you came under the group of vulnerable people that had to be shielded for twelve weeks.
Stay well, stay safe.
Love.
Sylvia xxxx
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Treatment update! Bloods were good and all in range so today I had the whole suite (paciltaxel, herceptin and perjeta) with no overt reaction and only one dexamethasone prior to IV. I developed a UTI Tuesday which was perplexing as it didn’t show in the bloods (that pegfilgrastim must work a treat). MO ordered urine tests. Received a text late today confirming infection so will be on antibiotics to manage as soon as I can get the script tomorrow and get it filled. Sounds strange but I am glad it is an infection because the discomfort is almost constant and I was imagining all sorts of nasty issues. Downside is that's two infections in the last few weeks. Treatment really throws the body out. Just hope it throws the cancer out for good. To that point tumor on chest wall is all but a small scab now. So its working well there.
Thanks for your tips on staying regular!
Good to see lots of conversation and welcome Dolly to our forum.
Isolation is being downgraded in Australia with some states more relaxed than others. In my state NSW as of tomorrow are allowed to visit. 2 adults and children may visit 2 adults (that's clear as mud). The governments are concerned about mental health so want people to visit family and friends but no big BBQs, parties and no large gatherings.
How are you all coping?
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Hi Sylvia,
Neither my husband or I have been tested for the corona virus. In British Columbia there is not a lot of testing done - usually only on people who are exhibiting symptoms of covid 19. In regards to the flu shot, I am actually quite scared of having foreign things put in my body - overcoming this fear is something I should work on. This is probably one of the reasons that I do not like taking medications. In fact, my husband often reminds me that he had to take me to chemotherapy kicking and screaming - believe it or not, I had reservations even about cancer treatments. But I did it, and I have survived. My ideal would be to have a strong enough immune system to combat covid 19 and this is something I work on to improve. I do find that Chris Woollams has a very level headed approach to the virus. I read his articles and they somehow make sense to me. One thing I am fairly certain of is that I will not be first in line for the covid vaccine whenever it becomes available.
Stay safe
Adagio
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Hello Helenlouise,
Good news Helen, apart from the UTI. Yes, chemo throws up every little weakness in our bodies. Urinary tract infections are horrible, but I'm not surprised that the test confirming it came as a huge relief. Your mind must have gone into overdrive for a while. The chest wall tumour now nothing but a small scab! Hope the chemo continues to give it a hard time. You deserve to win this battle once and for all.
Lock down continues here - in theory. Apparently there's a lot of traffic on the roads in a few parts of the country as some people have had enough and are ignoring the rules. Some restrictions are to be eased off soon. We could (perhaps, maybe, definitely not) be allowed to select a bubble of ten friends or family to socialise with. I doubt if this will include those designated by the NHS as shielded, so my life won't change much. Australia has handled Covid-19 so well. Really quick to act. We can only look on with envy!
Hope the antibiotics work quickly and the good news continues.
Love,
Gill xxx
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Hello Adagio,
Hope you won't mind me chipping in on your post to Sylvia. Had to laugh when you said that you won't be first in the queue for the Covid -19 vaccination - me neither! There have been suggestions here that if and when a vaccine does become available, those on the shielded list will have first dibs. If so, I shall go into hiding.
Gill x
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Hello Helenlouise,
Thank you for your post. I was glad to read that all had gone well with your chemotherapy but sorry to read that you are now on antibiotics for a urine infection. I do hope you will get quick relief from the infection as my understanding is they can make you feel really awful. I have never had one so I cannot speak from experience.
All this must be very exhausting for you but just keep looking forward and telling yourself that you are going to get through this journey.
Thinking of you and sending love and best wishes.
Keep safe.
Sylvia xxxx
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Hello adagio,
Thank you once again for your post.
I do understand your fear of having foreign things put in your body. I feel the same, if that is any consolation. I have always been reluctant about flu jabs, but in 2005 when I started treatment, the oncologist told me I needed to have them because my immune system would be weakened.
I am not taking any medications and I hope to keep going like that. I tend to keep clear of my GP. I do wonder what the experts are going to come up with in the way of a vaccine, if they ever do.
I do understand your reluctance to have chemotherapy. I was very reluctant to have breast cancer treatment at all and I did delay from diagnosis in June to starting six months of chemotherapy in November and I did take alternatives and homoeopathy both before and during all my treatment.
I shall wait and see what happens with both flu and coronavirus vaccines at the appropriate time.
It has been very difficult for me to see Raymond on medication since his surgery and difficult for him because he had also remained virtually medication free before all of this. I have read the side effects of his regular drugs and they are frightening.
Like you, I am a great admirer of Chris Woollams and his level-headed approach to the coronavirus. I do think his articles make sense.
That is all for now. We are heading into a Bank Holiday weekend, but not much fun during lock-down.
I was thrilled to see Debbie popping in on the TNs.
If you want some relaxation have a look at the thread entitled A Retreat for Peaceful Contemplation in the forum Emotional Crises: Anxiety, Depression and other Emotional Effects. I have seen some lovely photographs there.
Stay safe.
Love.
Sylvia xxxx
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Hi Gill,
Of course I do not mind you chipping in - it is encouraging for me to know that I am not alone in my apprehension and misgivings about the covid 19 vaccine - I guess we all have to be patient, do the best we can in terms of physical distancing and hand washing - it will be very interesting to see how it all unfolds.
Have you had any experience with Zoom platform for connecting with family, church members etc? Our church (Anglican) does its services on Zoom each Sunday and I must say that it is just not the same as physically gathering with like minded people. I sing in the church choir and I do miss the singing very much.
Have an enjoyable weekend - we are hoping to "get together with our children" in a large open field - just to say "hi" from a very safe distance. Such crazy times. Stay safe.
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Hello everyone,
I am just popping in to wish you all a relaxing and safe weekend.
I have just been reading the excellent article in Chris Woollams latest email. It is 12 ways to boost your immune system. It is very detailed a he goes through the twelve ways. I hope you will take the trouble to read it and I welcome comments.
https://www.canceractive.com/article/12-ways-to-boost-your-immune-system
We all need to keep our immune system in good shape. I might try to post this information in more detail as I find the time.
Take care, all of you and do not let COVID-19 possess your every minute. Remember how we have said on this thread not to let cancer possess us.
Best wishes
Sylvia xxxx
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Hello Sylvia,
Hope you managed all seven chores on your 'to do' list. I'm a great fan of lists and make them all the time, just to keep some order in my life. I find them calming when all around is chaos.
Talking of chaos, the Government's manipulation of figures for coronavirus testing and PPE delivery to hospitals is breathtaking. Medical staff are buying their own or relying on schools or charities to supply them. Johnson knew about this emerging crisis, but disappeared on holiday instead of organising the procurement of equipment. His negligence was a deliberate act and people died because of it. I simply cannot believe that cancer treatment will go ahead as normal. It's all about the money. I do not appreciate Johnson's father saying that his son 'took one for the team'. Neither am I impressed by the PM's tales about being at death's door or using 'litres and litres of oxygen'. The poor me, virtue signalling approach must be sickening for those who have lost loved ones. Seeing him clapping for the NHS is nauseating. I also noticed that Livido is still on the scene.
Michael and I haven't been offered a test, I doubt if we will be. I'm not sure why people who completed their chemotherapy over a year ago are considered more at risk. I would have thought that Michael would have been more vulnerable due to type 2 diabetes.
I'm very glad that Raymond is recovering so well, has his leg improved? Thank heavens his surgery took place in mid February, before Covid-19 really took over the NHS.
The moderators have invited people with metaplastic breast cancer to start a thread. I began one yesterday, but very much doubt if they'll be any response. There are two very active private sites on Facebook and most people seem to use these. I avoid social media and this is the only forum I'm involved with. Other breast cancer forums seem very lightweight in comparison.
I haven't had time to look at Chris Woollams' latest newsletter yet. I find it very useful and it's not just for people who have cancer. If parents with young children were to read the articles on diet and sugar, it might make a difference. I know fizzy drinks are only the tip of the iceberg, but I see more people and especially children swigging from cans than having sugar in any other form. So many people ignore the relationship between obesity and cancer. Now it seems that people are less likely to survive coronavirus if they are obese.
My post has moved a long way off the topic of TN breast cancer. There's very little in the news about ant type of breast cancer lately.
The sun has just appeared, still cold and windy though.
Keep well.
With love,
Gill xxx
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Hi Adagio,
Here in the UK we hear more every day about possible treatments, like using blood plasma infusions from recovered Covid-19 patients, and also possible vaccines. Scientists are giving it all they've got. I'm very grateful to those who've volunteered for trials. Me? I'm still keeping my head down at the back of the queue.
I haven't tried Zoom, though Michael hopes to use it for his virtual Parish Council meeting next week. Don't know how well this will work as some Council members are more technology minded than others. Services at my church have been on you tube since lock down. I keep in touch with some of the parishioners via phone and email. One good thing that has come out of this crisis is our ability to attend church services anywhere we like. I've caught up with several favourite priests and really enjoyed seeing them in action again.
You and Mary are both stalwarts of the church choir, you must miss it. I envy anyone with a good singing voice. My primary school teacher begged me to mime as my tuneless whine was putting the other children off. I've mimed ever since, except at Midnight Mass when the Cathedral is full, the singing loud and enthusiastic and nobody cares anyway.
Take care.
Love,
Gill x
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Hello everyone,
I was researching Vitamin D and immunity a couple of weeks ago and came across this very lucid you tube video by Dr John Campbell. He is a very plain speaking man who talks a lot of common sense. Hope you might find it useful, particularly during this difficult time.
Gill x
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Hello Gill,
Thank you for your latest post. I rarely manage to get through a complete list but I just transfer the remainder of the list to the next day and carry on. I have lists about the running of the apartment complex, lists about our own personal things to do, and various sundries. It is good that I am extremely organised and energetic and also a minimalist in my own life.
I am no fan of Boris Johnson or his government. I do not like the way he is milking the situation and trying to play on people's emotions. We are in a mess and that is because of ten years of austerity and no doubt more such years to come.
As for the so called daily 'briefings', if only they were brief and to the point!
It is somewhat bewildering how the vulnerable list has been compiled and whether some have come from GP surgeries and others from the government. I do agree that people with type 2 diabetes are very vulnerable but I would also think that chemotherapy patients not long out of treatment would be vulnerable because it takes quite a time for the body to recover from that treatment. I sometimes think the body is never quite the same.
I do think serious forums are probably suffering from these active sites on Facebook but I would not join them. Who is moderating them? Like you, I avoid social media. I have always tried to make this a quality thread, to help and inform patients going through treatment.
As you know, I have been following Chris Woollams for the best part of fifteen years and really liked his icon magazine. I am not sure what has happened to it now. I do read all his emails and then read the more detailed information. He is so full of common sense.
The weather is awful today here in Exmouth. It was quite wild during the night and now we have torrential rain and high winds. We are getting March and April in May! Yesterday I started to do some work in the grounds because our gardeners are running a bit late but also because I enjoy it and feel better out in the open. I have heard some scientists say that with the coronavirus it is better to be outside than cooped up at home.
Raymond is making good progress but it is slow mainly because of the long wound in his leg. The oedema has disappeared except for the foot and he has stiffness around the ankle. I suppose in time it will go. We do manage to keep walking, but I do not think that is going to happen today!
Keep well and keep safe.
Love.
Sylvia xxxx
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Hello Gill,
Raymond and I were just watching the latest video on Youtube with Dr John Campbell. There was no mention of vitamin D in this particular one. To save us a lot of time can you remember the date of the one you watched?
We do know how important vitamin D is for good health and also that cancer patients often have low levels of this vitamin. I was very lucky because I had my vitamin D level tested not long after diagnosis and was congratulated by my consultant on this. In general i think lots of people in the UK are probably very low or deficient and need to supplement because of the lack of sunshine.
Does Dr Campbell think there is a connection between low vitamin D or deficiency and getting Covid-19?
In the past I have read that vitamin D should more correctly be called a hormone.
Sending best wishes.
Love.
Sylvia xxxx
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Hello Sylvia,
I realised soon after posting that I hadn't given you the date of the video I'd recommended. It's 'Vitamin D and Immunity, Lots of Evidence', You Tube 15th April 2020. Dr Campbell makes it clear that shortage of vitamin D, (and many people are deficient), predisposes us to viral infections. He points out that this is relevant during the pandemic. What I found most interesting is the fact that people with darker skins are slower to produce Vitamin D. The darker you are, the slower Vitamin D production is. This may explain why a disproportionate number of people from minority ethnic backgrounds are dying of Covid 19. Dr Campbell is very down to earth and I intend to search for more of his videos when I have more time.
I've been taking extra Vitamin C for many years and began Vitamin D as soon as my chemotherapy was at an end. For years I had covered up and avoided sunshine - as advocated by the medics. My grandchildren play outside in the sun for twenty minutes before one of their parents covers them in sunscreen. Over the years I've lost faith in what the medics advise and research everything for myself. The Internet has its uses!
The Guardian has reported that the UK death toll has now overtaken the rest of Europe. What an absolute disgrace. Johnson led by example and shook hands with as many people as he could and then boasted about it to anyone who would listen, this was on the very day that SAGE had warned against hand shaking. Cummings and his sidekick have set the scientists up for a fall and Johnson will escape the blame again. I would like to say that words fail me. They don't, it's just that most of them are unprintable.
Interestingly, my Holland and Barrett vitamins arrived within a few days this time. It seems that they might be getting the hang of internet ordering at last. I do wish they would stop using plastic though.
Mary hasn't posted for a while. I seem to recall that she had an appointment with her doctor to talk about her weight loss. Hope all's well. I found Maryjv on another thread and she seems to be doing well. I was wondering about Marias and if she's still able to get hold of the medicines she needs. I can't begin to think about how her Government will control Covid-19. I imagine it won't. I was wondering how Flora's mother is doing and also Susie. I wish they'd drop in from time to time.
Was Raymond ever told how long his leg wound would take to heal fully? Oedema in the foot is such a nuisance, apart from the stiffness, it can make shoes buying very difficult.
Our weather isn't as bad as yours, still very cool in the breeze though. Apparently Norfolk will be warm and sunny again by Thursday.
I've discovered a local company that sells vegan chocolate. I find Montezuma 100% difficult to enjoy and this appears to be a good alternative. Vegan chocolate has come a long way and is really very good - no palm oil.
I'd better go and get on with something in the garden. I'm planting the potatoes that have sprouted in my vegetable cupboard.
Keep well both of you.
Love,
Gill xxx
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Hello Gill,
Thank you very much for your post. After posting to you I started looking at all the videos that Dr Campbell has made and I was very impressed. I did find the video about vitamin D and immunity and Raymond and I watched it with great interest this afternoon. We did know quite a lot about vitamin D because I researched it many years ago and Chris Woollams had stressed its importance quite a long time ago. Nevertheless we both watched the video and were completely absorbed with it. I think Dr Campbell is marvellous at explaining everything and I do hope all those viewing here and our group will watch it. I have been buying vitamin D regularly online for many years and buy Solgar (5,000 iu) from Nutrisun. It is a bit cheaper there than in H&B which is where I tend to buy any vitamins etc.
It is useful to know that a shortage of vitamin D predisposes us to viral infections and so it can do only good to take it during the pandemic.
I did know that people with darker skins are slower to produce vitamin D so I was not surprised to learn that this is a problem for them. As soon as the newscast started to say that the black population and the brown population were getting a higher incidence of coronavirus, I immediately said to Raymond that vitamin D could play a part. We also have to remember that the same ethnic communities make up a great deal of the NHS and are on the front line. A lot of them will be living in major cities and in confined spaces and do not earn much. This all seems to be, to me, common sense, but seems to be a mystery to the privileged lot running the country.
I did have my usual list of things to do today but I have not done many of them. Raymond and I watched the Dr Campbell video and then I started looking at the long list of other topics he has covered. I saw coronary heart disease and of course we had to look at it to learn whatever parts of it we did not know. I knew a lot because I had spent hours reading up about it in my huge BMA book but I did enjoy the clarity of Dr Campbell. We both feel tired now but also feel the time we spent was so worthwhile.
We do need to spend time in the sun, but not get burnt. I read sometime ago that 30 minutes is enough to get the amount of vitamin D you need and that any more time is a waste. I think that all the mania there was for sunblock all the time was very bad.
I do think it is a good idea for all of us to do our own research and I do not take what doctors say for gospel.
The latest news is that the death toll here for coronavirus has gone over 30,000. That must be the worst record in Europe.
I was glad to know that H&B is getting better at internet delivery. We waited three weeks for one of our orders.
I have also been wondering about Mary. I do hope that she is alright and that she got good news from her doctor about her weight loss. I do hope Maryjv will come back to us. As for Marias, I am sure she will get back in touch but it cannot be an easy life with all the problems in Colombia. I do miss Susie from London on the thread and do wonder how she is getting on. It would be nice to hear from Flora about how her mother is doing. Let us hope our missing friends are still reading and will pop in from time to time.
Raymond was told that it would take at least three months of recovery and we are just beginning the twelfth week. We just have to be patient.
It has been an awful day here but we are told it is going to be hot on Friday and then go cool again for the weekend and next week.
That is about all for now.
Love.
Sylvia xxxx
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Hello Sylvia,
I see that Professor Neil Ferguson has resigned. That's another Government scientist gone. I'm not particularly impressed that he broke the rules, but we need men like him to ensure that the public knows what's really happening with Covid-19, lock down, easing the going back to work process and so on. Johnson's girlfriend moved out of Downing Street once social distancing had been introduced. However, when the PM came out of hospital they both went off to his country home, Chequers together. The PM happily broke the rules. Jenrick, the Housing Secretary broke lock down to visit his parents. Neither have resigned, but a Government scientist does! I don't know if you saw Matt Hancock's response to the Labour MP and A&E doctor yesterday in Parliament. It seems that the truth, criticism and holding the Government to account is no longer allowed.
I'm deeply concerned for those who have cancer and urgently require treatment. My friend in London had her treatment cancelled and still hasn't been given another appointment. Dolly's mum seems to have fared better in that she did get to have a full discussion with three members of the medical team and has heart surgery planned. Scotland may be better organised though.
I had a strange experience this morning. I left a note on my recycling bin thanking the collectors for working throughout the crisis and said how much we appreciated it. When Michael went down the lane to bring the bin back, the note was screwed up and the bin left full. A neighbour's bin standing next to ours - but without the thank you note - was emptied as usual. I've obviously offended them or perhaps I've been a bit tactless?
I want to try to get down to reading Chris Woollams' latest newsletter before too long. I don't think it will be today as the weather is good and I'm falling behind with the gardening.
Keep well.
Love,
Gill xxx
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Hello Gill,
Thank you for your post. It is quite true about Boris Johnson and Jenrick. They should have resigned, but they have different rules to us. I did not see Matt Hancock's response to the Labour MP and A&E doctor but my brother did tell me about it. You are quite right that he was out of order but it does not surprise me with him. What an uninspiring, dull, boring lot we have in government. There is no one with any personality. The daily briefings are just a repetition and hardly worth watching.
I do hope that the NHS will now concentrate on all the other patients with life threatening illnesses. We are told there is now plenty of room but I am suspicious of this, with all the waiting that went on before Covid-19.
I cannot understand the attitude to the note you pinned on your bin. It could be they are getting fed up with all the rainbow notices pinned around. What they really need is better pay and better working conditions.
That is about all for today. Have a nice Bank Holiday weekend and let us see what Boris has to say on Sunday. I doubt if it will be very much.
Love.
Sylvia xxxx
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Hello Sylvia,
The weather was so good here yesterday that Michael and I went for a long walk in the countryside. The hedgerows are so full of wildflowers at this time of year. From my research I don't think that I'm any more vulnerable than other 65 year olds. The NHS letter might well have been a mistake. I've spent some very frustrating hours over the past week trying to cancel my Government grocery box for vulnerable people, the system wouldn't allow it, so I'll refuse the next delivery. I'm grateful for the thought and it helped at first, but supermarket delivery slots are more available now. I've also been ordering via the Internet which has opened up a whole new world of coffee, Italian and Spanish food, organic produce and vegan chocolate. I remember you recommending 100% chocolate, I did try it, but it was a bit of a chore. Vegan chocolate used to be very plastic in texture and taste. However, it's come a long way and I order it from a local company who only sell via the Internet. The evidence concerning the benefit of high cocoa content chocolate is mixed. However, there are reports that chocolate is beneficial in lowering blood pressure, raising levels of good cholesterol and lowering the risk of cancer. All things in moderation, and watch out for the sugar I guess.
I recall you mentioning that following Raymond's heart problems, he was advised to drink coffee. Presumably that would be black coffee? There seems to be a whole raft of contradictory research regarding the benefits/dangers of coffee. Apparently the view that excess coffee drinking caused arteries to harden was completely wrong. I wonder what your view is? I am able to drink coffee again without a colitis flare up and have about three cups a day. It does seem to lift my mood and give me an extra burst of energy.
Like you, I hope to see hospitals treating all life threatening conditions again. Cancer surgery cannot be delayed any further. The wait for breast surgery in Norwich was dangerously long even before Covid-19 struck.
I do wonder how our friend Mary is? I hope she's keeping well and out of harm's way on the farm.
Love,
Gill xxx
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Hello Gill,
Thank you for your post.
I am sure that your long walk in the countryside must have been very therapeutic.
I am not sure how the decision to shield certain people was arrived at. I think it was probably based on information from GP surgeries, but I am not quite sure how the GPs arrived at that decision. A cousin of mine was shielded and that seemed to be because she has COPD and asthma and can have quite bad respiratory problems, she did get a letter to say she was being shielded and had to stay at home for twelve weeks. She is 59.
it probably would have been more sensible to ask those receiving the letters about being shielded whether they wanted the parcel. I shall be interested to know whether you succeed in refusing the next box when it arrives.
I was interested to know that you are enjoying the new foods opened up to you via the internet. What are you enjoying in particular? I have quite a wide knowledge of different foods having lived and worked in France and Morocco, not to mention Canada, and a long time ago I travelled a lot through Spain on the way to Morocco. I still prefer just simple food.
Raymond and I order mostly through Tesco because that is where we have mainly shopped during the eighteen and a half years that we have been living in Exmouth and where our main supermarket has been Tesco. It has been quite a change to do our supermarket shopping online. We also shop at a natural food store here, know the owners well and they are delivering to us during the lock-down.
We emphasise fruit and vegetables in our diet and I try to buy UK produce or organic. We do not eat meat, poultry or cow dairy products but we do eat oily fish such as wild salmon. We have lots of raw nuts, some seeds, roasted peanuts, beans and pulses and we drink Alpro unsweetened soy milk and eat organic Sojade plain soy yoghurt.
We still eat our 100% Montezuma chocolate and really enjoy it. We also sometimes make hot cocoa with Green and Blacks organic pure cocoa, which has no sugar. What chocolate are you eating?
I suppose we all have individual tastes and we just do our best to stay healthy.
There is so much conflicting information about everything so that in the end we just have to make up our own minds about what to do.
There is conflicting information about cholesterol and it seems that cholesterol in the diet has only a minimal effect on the blood level of cholesterol. Most of what goes on with cholesterol is the natural production of it in the liver. It is quite difficult to understand how you end up with HDL, LDL and triglycerides etc. My information is that you can have normal levels of cholesterol but still end up with coronary heart disease and blocked arteries.
As for coffee, Raymond was not advised to drink coffee after his surgery. It just so happened that I was puzzled and disappointed about what happened to him that I started researching possible natural ways of clearing plaque from arteries and I found a medical article which was offering a possible diet and it said the most important was to have a teaspoon of virgin olive oil daily as a means of clearing out arteries, and then recommendations of food to eat regularly, most of which we were doing. They were, olive oil, avocado, oily fish (a few times a week), mixture of raw nuts (four to five times a week), citrus fruit and natural lemon juice drinks, three cups of coffee, turmeric, broccoli, whole grains and pomegranate seeds. Most of this we were having anyway. As for the coffee there is always a debate about this. We just have one mug a day and we buy the best decaffeinated ground coffee that we can buy. Usually it will be Tesco Brazilian coffee or Taylor's of Harrogate coffee. We drink only black coffee.
The article also said that you should continue with a low dose aspirin and a statin if you were being prescribed these.
I tend to think that hardening of the arteries probably occurs through ageing.
We drink mainly a variety of green teas and have been doing so for very many years. Clipper green leaf tea, Clipper decaffeinated green tea, Pukka Supreme Matcha green tea and Tick Tock Rooibos Green tea, and all of those plain as they are.
I do hope that cancer treatment will get back to normal. It is not right that it has been neglected because of Covid-19.
We have just watched Boris Johnson make his statement. What a disappointment! He did not have much to say, just more lines for everyone to repeat and no real change.
I am very concerned about Mary and do wonder what is going on with her. I hope she is just taking a rest and that she has not had bad news about her weight loss. I hope that all this news about the coronavirus is not getting her down.
That is about all for now.
Love.
Sylvia xxxx
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Hi, Sylvia, Gill and all
I am back like the bad penny, it seems very hard to settle down and type these days. Last week was another busy one, and on Monday I visited my General Practitioner and showed him a strange pattern on my arm and asked him if it was possibly indicating Lyme disease. He said it was possible and asked if I had had a tick bite and I said yes, since I have been working in my yard at the edge of the woods and going to the farm I am bound to have ticks on me at times. Anyway, he drew blood and sent it off for a test but results not back yet.
Then on Wednesday I had my oncologist appointment to follow up my annual Breast MRI. She said there was a 3 mm spot in my remaining breast, and whoever read the test thinks it is a cyst, and said to follow-up in 9 months. She looked at me and said she was not going to wait 9 months but would follow up immediately. I am so glad, the first tumor I had appeared and grew so quickly. So tomorrow I will have a focused Ultrasound, and see her again on Tuesday and we will discuss. Wish me luck, ladies, it's the first sign of anything in 6 years and I am just kicking myself for not getting that other breast removed at the time. Although actually I am not sure insurance would have paid if I didn't do breast reconstruction. HIndsight is 20-20 however.
The GP also drew blood for a lot of blood tests and they were all good, he even tested for mononucleosis. I don't have it, but apparently did in the past because I have antibodies for it. Not sure why he tested for it, although I wasn't feeling very well that day overall.
Then there is the lingering spectre of Covid19. The big fear seems to be that people will get more and more comfortable as the weather gets warmer, as they move about more freely. Then in the fall look out when the virus makes a big return, but the truth is nobody really knows. The smartest doctors in the world have theories but don't really know. It's just a surreal way to live.
I have really developed a dislike for Sundays, to me who lives alone, they seem the loneliest day of the week. I seem to have contacts and outside visits throughout the week, and then Sundays are just to be gotten through. But Gill, I went to Mass today! Our first one since early March, and it was quite different. The doors are to be propped open throughout the Mass, and for entering and exiting. Everyone MUST be wearing a mask. There are local emergency personnel there to supervise the seating, which is in alternate benches and very few people in them. When people come up for Communion, with distant spacing, they are to leave mask on and receive the Host in hand, then walk away, lift one side of mask off ear, and take in the Host and then move on. Not surprisingly there were very few people in attendance. I went up on the Choir, and there were 5 of us plus the organist. But we had to space out and (gasp) remove our masks to sing. Then the lady who usually turns on the sound system didn't do so, and we found out later our mics weren't working anyway. And our priest, who everyone really likes, is leaving because he is being sent elsewhere. So we will be back to square one with the question of are we a viable parish?? Our priest said he will go to bat for us with the Bishop, because he thinks we definitely are viable. All in all, it was a rather gloomy experience, maybe I will get better at it, going to Mass in the age of coronavirus.
Other than that, I am plugging along with my outside work and trying to keep up with my walks. Then every few days I have a day of exhaustion and do nothing. This week a bricklayer is coming to repair the mortar that's cracking off my house in places, such excitement! I have some baby groundhogs in residence at the farm that are really quite cute, their mother was killed and I think they are old enough to live on their own. Now I think they are cute, someday I will be cursing them. And I think I am getting a puppy in about a month, still unsure about this decision, but I do love dogs. I hope it's from the quieter side of puppydom. I still have some weeks to change my mind.
I hear of deaths but funerals are family only and quickly over, I'm sure I have missed acknowledging quite a few deaths by now. Not from Covid, so far our county has no deaths from that, I hope it stays that way.
I have not been here in a few days, so I need to do more back-reading. But I wanted to check in and let you, my friends, know that I am still here. I hope this finds everyone okay, and thriving, and I will be back sooner rather than later.
Love, Mary
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Hello everyone,
I am posting some photographs of the plants in bloom in our grounds in the apartment complex. I thought they might cheer us all up.
Hello Mary, I was so happy to see your post and I shall answer sometime today.
Love and best wishes to our friendly group and to all those viewing. Do not be too shy to come on board.
Sylvia xxxx
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Hi Mary,
Very relieved to hear from you, definitely had us worried for a while. You do seem to be going through the wars though. I get the occasional tick bite, it's inevitable with deer roaming around the back field. Our two cats hunt in the field and often bring ticks home. We check them regularly and have a very efficient device for removing them. Two people in the village have had Lyme disease in recent years, both recovered after a course of antibiotics. Fingers crossed that your test comes back clear.
Mary, you must be very worried about the 3mm spot. Thank heavens your oncologist is having this fully checked. Assuming it's just a cyst would be plain wrong. We tend not to use mri much for checking breasts in the UK, just mammogram and then ultrasound if something looks suspicious. My mammogram in November 2017 apparently indicated the presence of a cyst. It wasn't checked and it wasn't a cyst! Like you, I would have felt safer having both breasts removed but it wasn't an option. Cysts are just so common that they are too often overlooked, I'm so glad that you have such a proactive oncologist. Lets us know what happens on Tuesday. Wishing you luck.
I'm surprised that your Church has opened for Sunday Mass, albeit with masks and open doors. The lady who usually switches on the mics must have forgotten her job after so many weeks in isolation. No news about our churches reopening and I saw something in one of the papers that suggested they may remain closed until next year. What, no Midnight Mass, carols, mulled wine and mince pies with the Bishop? This will leave many of our parishioners to face a very lonely Christmas. I completely understand why you find Sundays difficult. Living alone can't be easy at any time, but Sunday is very different and often seen as a family day, a day to do something different from the rest of the week. Not so jolly when you're on your own though. I haven't looked forward to Sundays for years, despite Mass, it feels like an empty unproductive day to be endured rather than enjoyed. Sounds to me that a gloomy Church service might be worse than no service at all, it just reminds everyone of what they've lost. It's not really a future that I want to think about. I'm just praying that Covid 19 quickly mutates into something that our bodies can cope with, like the common cold or that someone comes up with a vaccine sooner than expected.
It's disappointing that your priest is being moved on. The timing couldn't be worse, now is the time for continuity, a sense of the unchanging, security. Someone should have a word with your Bishop, he needs to adjust to the situation - maybe consider the social and mental impact of the pandemic on congregations. We've all had enough change to last us a lifetime. Hope you don't have to go into battle to keep your Church open. It seems a distinct possibility though.
Good luck with finding a quietish, obedientish puppy that won't chew the furniture or you.
Praying that your tests come back clear. Let us know.
Love,
Gill xxx
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Sylvia, your flowers are beautiful. Devon is well ahead of Norfolk, our gardens tend to burst into flower towards the end of May. Thank you, your photos brightened my day.
Gill X
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Hello Mary,
I am so glad you are back on the thread.
I do hope that your blood test results for Lyme disease come back negative. It is a very nasty disease and is caused by a bacterium and can have all kinds of nasty complications. If it is positive you will need to get on those antibiotics.
It is good to know that you have an oncologist who is being thorough and will take swift action. Let us hope that it is just a cyst. I shall be thinking of you tomorrow and hoping that all will be fine.
You are so lucky to have such thorough treatment. I cannot imagine getting a lot of blood tests like that here. It is very difficult, even in normal times, to get an appointment with your GP and more and more we are going to having telephone appointments, which I do not think is acceptable. Do you not remember having mononucleosis? Raymond had it in his late thirties and remembers how unwell he felt.
As for Covid-19 I am not sure where we are going in this country, especially in England. We have the highest number of deaths from it in Europe and I think the number given is lower than it really is. The government has been too slow every step of the way and their main aim has been to keep the number of people hospitalised to a number that the underfunded NHS can deal with. The government does not want to be shown up for its underfunding of the NHS during the past ten years of austerity. The front line staff have been exposed to unnecessary danger and death because there has not been sufficient PPE. I think we are probably going to have to live with this virus for some time because I think it will take time to get a vaccine. The government has been too slow with testing.
I was sorry to read that you feel particularly lonely on Sundays. Perhaps you could try to organise something special with friends and neighbours when this virus has gone away.
Everything is much the same here. Raymond has now gone twelve weeks since surgery and is making good progress. The main problem is the swollen right foot on the leg where he had the large cut. It will probably take a while to go. We do go for a walk most days and usually cover two miles. It is a strange feeling with all this social distancing going on.
Take care of yourself, Mary, and do not work so hard. It is good news that you have no deaths so far from Covid-19. We have a low number of deaths in Devon and I think that is because we have a lot of elderly people who are not out and about like the youngsters. We keep being told that the 65/70 upwards group are the most vulnerable but I think there is too much ageism in all that.
I hope you manage to catch up with the Chris Woollams emails. There is a lot of interesting information in them.
Sending all my love and best wishes.
Sylvia xxxx
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Beautiful pic Sylvia. Thanks for brightening up the day xxx
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Sylvia - Your grounds look stunning - so vibrant and colourful.
Mary - thinking of you as you go through this trying time with fatigue, 3mm spot on your breast, possible Lyme disease - oh my - I don't think I could handle it as well as you are doing. I absolutely adore dogs and I hope you find one to share your life and allow it to wiggle its way into your heart - they are such wonderful companions. I really miss my dog - 3 years have passed since he left us and honestly I still pine for him.
Gill - so glad you enjoyed a nice long walk in the countryside - I feel that me daily walks are what keep me going - I call them my medicine.
Yesterday was Mother's Day here in Canada - and we had a phsically distanced gathering in our back yard - each family brought their own food and drinks - the weather was glorious and we enjoyed our time together. There was my son and his wife, my daughter and her husband along with their 3 year old daughter and us. It was good to see people - but we are looking forward to hugging each other. Our province has said that it is OK to meet in small groups as long as we are outside and 2 meters apart.
Our province has also started doing elective surgeries again - so we do see some signs of moving forward. I wonder if I will soon be called for my CT scan which was postponed just 2 weeks ago?
Stay safe everyone.
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Sylvia and all,
Thanks, Sylvia, for posting the beautiful pictures of the flowers on the grounds where you live. Just gorgeous.
For me the drama continues, the Ultrasound test yesterday was inconclusive, so tomorrow I am going to the hospital for a Biopsy. Hopefully this is all just an excess of caution, but I appreciate it, much better than just sitting around thinking about it.
Now my oncologist follow-up will be next Tuesday with results, but if results are known earlier they will let me know.
I have to call my GP tomorrow about the results of the Lyme Disease test. He isn't in on Tuesday, but I dropped by his office and picked up a copy of the report. Of course, I didn't quite understand it, and it was very long. I did see a lot of "negatives" but when I got to the Rocky Mountain Spotted Fever, there were a couple of positives. Then it went on about could be past or present, and 10% of tests have false results, and the truth is I don't know so I will call the doctor.
As Sylvia often says, Stay tuned!
Adagio, I hope you get another dog. Perhaps you could find a calm sedate dog. That is really what I need, a puppy will probably drive me mad. And I will have to check it for ticks!
Gill, I suspect the Bishop and his helpers might take advantage of this Virus situation and think it's a good time to shut us down, but then I have a suspicious mind!
I will check back in soon.
Love, Mary
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Hello Mary,
Thank you for your post and I was so glad to know you liked the flowers.
I do hope you will soon know what the ultimate result is but I think it is good to know that everything is being done thoroughly. I shall be thinking of you as you are having that biopsy. As you say, this thoroughness is better than sitting around waiting. I do hope this will all have a happy ending and that you can have some peace of mind. It sounds as though you could do with a nice relaxing holiday but at the moment it cannot happen because of the coronavirus.
I do hope you get some good results about the Lyme disease. I am interested to know what goes on with Lyme disease, because a cousin of mine knows someone who was diagnosed with this, I think when she was in the US, and she seems to treat it as a chronic disease. She seems to be on macrobiotic diets.
I am sure that our dedicated group will be thinking of you and hoping all ends well.
Things are much the same here. Our lock-down is supposed to be easing but I think it is going to continue for some months. I spoke to my dentist yesterday who of course is shut down for the moment and he was telling me how complicated it is going to be for dentists when they are finally allowed to open. I could do with an appointment but I think I am in for a long wait. Everything to do with going to the few shops that are allowed to be open involves long queues outside because of the social distancing requirements.
Last night I watched a most interesting documentary, on PBS America, entitled Influenza 1918 – The story of the worst flu epidemic in history which broke out as the First World War was ending. Approximately 25 million Americans were affected leading to 675,000 deaths. Over here we know it as the Spanish Flu epidemic and how devastating it was. I think everyone should watch it.
It was absolutely deadly with more deaths than today's coronavirus and it has many eerie echoes of Covid-19. It was almost as if the 1918 virus had reappeared just over 100 years later. I do hope you get to watch it.
Chris Woollams seems to be very active lately and is talking about so many different things. It is hard to absorb it all.
The NHS is supposed to be getting back to treating all the patients that have had their treatment put on hold because of Covid-19. I think it is going to take ages to catch up. There were long waiting lists before the coronavirus hit.
This country is in a mess, to say the least.
Keep your spirits up.
Love.
Sylvia xxxx
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