Calling all triple negative breast cancer patients in the UK
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Hello Kath,
Thank you for your latest post. We have a similar procedure here in the UK on the NHS. If needed people are called in to their hospital for a colonoscopy.
It was good to know that in Australia the numbers of Covid-19 cases are dropping dramatically. Here in the UK the cases seem to be rising dramatically and there were over 4,000 cases just yesterday alone. There seems to be no organisation and the government keeps changing its mind and there are differences in instructions from England, Scotland, Wales and Northern Ireland, so people get very confused and a minority of people are not doing social distancing or remaining in isolation when told to do so. We are probably going to get a new set of instructions in the next few days, so we shall be even more confused!
I am expecting more confusion as flu injections will begin in October. People are being sent letters to fill in and then phone the GP to make an appointment to go for a drive-through flu injection in a car park. We think it will probably be more chaos. We are ignoring it for the moment until we get more information about what is in it. I think it is all going to get muddled up with Covid-19. People are turning up with slight sniffles at A&E demanding Covid-19 tests, which are not avilable.
Keep in touch and keep us informed.
Love and best wishes.
Sylvia xxxx
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Hello Peter and Liz,
It was nice to hear from you. I was so glad to read that everything went well on your flight to Aberdeen. It sounds as though everything was very safe.
I do admire you for that 500 mile drive home in your new motorhome and getting back at just gone midnight.
I think you and Liz have earned that short stay in Cromer and I hope you enjoy your new motorhome. As you say, summer is definitely on the wane. It is quite chilly here in Exmouth today with quite a strong wind.
Take care and keep safe.
Best wishes.
Sylvia
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Hello Sylvia,
I was interested, but not surprised, by Polly Toynbee's revelation that Eton College staff and students had all been tested for Covid. My daughter tells me that there are no tests available where she is. So much for a civilized egalitarian society. A fair society where the rules apply to all people equally without fear or favour is really a fantasy that Johnson threw out as a sweetener to the gullible. Covid and Brexit have just made the difference between the toffs and everyone else more obvious. We need a strong, insightful and hard working leader to see us through the pandemic and the Brexit crisis.
There's great concern amongst doctors and nurses that treatment for cancer patients will fall further behind as Covid infections rise again. Last week there was a story on the BBC website about a young woman who found a breast lump and contacted her GP surgery. Unbelievably, her doctor diagnosed her over the phone and told her that she either had a cyst or an abscess. In fact she had cancer. Thank heavens my GPs are much more careful and would have wanted to examine the lump or just referred me to the hospital breast clinic. I wonder how often this has happened?
I miss Mary's regular contribution to the thread. They were always interesting. Like you, I'm concerned about Jags and Marias. India appears to have completely lost control of Covid and infections are through the roof. The outcome in Colombia was never going to be good. I hope adagio has an appointment for her surgery very soon, even better, that she has already had her operation and is now recovering. I wonder if Jackiey will get back in touch, I'd be interested to know what she has decided to do about her upcoming Zoledronic acid treatment.
Earlier this morning I read that Boots Pharmacy is running low on flu vaccine and is now offering jabs only to the over 65's. This leads me to wonder if the NHS will have sufficient for everyone over 50, as promised by the Government. I had mine last Thursday, I usually book early as it takes about three weeks to kick in. Also, wouldn't be the first time the flu vaccine has run out.
Another sunny day here so Liz and Peter will be enjoying their few days in Cromer.
That's all for now.
Keep well and don't forget to find time to enjoy the last of the warm weather.
Love,
Gill xxx
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Hello Gill,
Thank you for your recent post.
I do agree that Covid-19 and Brexit have made the difference between the toffs and everyone else even more glaringly obvious. We are in a mess with the coronavirus and Brexit and we do not have the kind of leader we need to get us through it all.
I do think that cancer patients are going to suffer through all this and will not get the care they need. I do not like the idea of not seeing doctors face-to-face. I did phone our surgery this morning and did get a reply and spoke to a receptionist, so it was normal again in that respect, but it is still functioning with minimal contact because of the virus. I have arranged for Raymond and me to have flu injections next Wednesday, but it will be the same routine as we went through at the dentist. We shall walk there as the surgery is in the town. This will get more difficult if we get bad weather.
I do wonder where our thread is going and where the triple negative forum is going. All we seem to get now is new threads being created and then just stopping. Like you, I do miss Mary as she was a strong supporter and I am surprised that she has stopped posting. I do hope she is alright. Like you, I am concerned about Jags and Marias and do hope they will manage to keep safe and well.
I do wonder as well about adagio. She must have a lot on her mind and I do hope she does not have to wait for surgery and that she will come back to let us know how she is when she can. It is good that Kath and HelenLouise pop in as much as they can to keep us informed. PeterandLiz are always welcome and Peter always has something of interest to say. I do not know whether Jackiey will get back in touch. As I said before, zolendronic acid is not only for hormonal receptor status breast cancers.
It will be a real problem if there is insufficient supply of flu vaccine, but it would not surprise me. We cannot seem to get anything right. I did contact one of the pharmacies here and was told that it was better to do it through the surgery as they did not have any vaccine at the moment and did not know whether they would have any at all. It is probably an algorithm looking after the flu vaccine!
I understand from the news this morning that the track and trace app is now up and 'working'. Watch this space!
Everything now is on the computer and/or the smartphone and not everyone has one. I phoned our local Tesco pharmacy today, actually spoke to someone and listened to all the rigmarole about getting a flu jab there. Everything has to be done online. I asked what a person is supposed to do if they do not have computers and smartphones? I was told that they were not starting vaccines until October 5th and to phone back then if I wanted to get one done there and told there might be waiting around.
All we need is a harsh winter with snow and then we shall all be locked down permanently whether we want it or not!
I shall be glad to see the end of this week.
That is all for now.
Love.
Sylvia xxxx
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Sylvia, Gill, Kath, Mary and everyone else
Just an update on my situation. Thankfully I have recovered from the cardiac catheterization - I developed quite a big swelling in the groin which is slowly subsiding - it was tender to the touch and uncomfortable. My cardiologist said that this happens some times and take a few weeks to subside. Well it has been three and a half weeks since the procedure and it is just starting to settle down.
The cardiologist suggested I start taking a statin even though my cholesterol levels are quite low. I politely declined.
I have been in touch with the surgeon's office and apparently I will not get an appointment until October or even November - so things are slow - mainly because of backlog due to covid. The delay is giving me time to deal with my heart valve issue emotionally and psychologically - it has come as a big shock to me.
The good news is that I have very few symptoms which is good and bad - good in that I am in no discomfort - bad in that it can change at any given time. The only thing I have been told to avoid is walking up hills and carrying heavy items - so if I don't do that maybe I will be OK for a month or so. It is definitely a high anxiety situation but I do go on my daily walks and do all my usual other stuff without a problem. In fact if I hadn't had the heart ultrasound, I would be none the wiser and would simply be getting on with life.
Covid is a crazy situation here also - some of it just does not make sense to me at all - we have lived with viruses all our lives and sometimes I question why this one is so overblown? None of us wants to get it and I do think that the majority of people naturally social distance , wash hands more and avoid crowded situations. I am not paranoid about the virus, but I am very careful.
I will not be getting the flu shot since I have never had one and I am scared of them. Actually I do not like pharmaceuticals much at all which makes me a poor candidate for open heart surgery since they apparently have to give lots of drugs. Just this factor alone terrifies me, but I have decided that I would like to prolong my life if possible - so drugs are part of the deal.
Gill - I hope that you get your knee pain figured out soon.
Sylvia - glad that Raymond is doing well and that you are both getting out to walk when you can. Did Raymond have his sternum cracked open for his heart surgery? Or did they do the minimally invasive approach for his by pass?
Kath - good to have an update of life in Australia - and to see that you are keeping busy and well.
Life is a challenge these days for so many people.
Sorry that Mary has not been in touch, but perhaps she is ready to move on from cancer for the time being and that is OK.
Perhaps next time I type - we will have welcomed our new little grandson into the world - a covid baby - this is one bright thing in our lives.
Stay safe everyone.
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Hi Everyone,
I've dropped Liz off at the hospital this morning for her gall bladder operation and the good news is she is first in. Hopefully she will be able to come out tonight as she hates hospitals.
Liz has now been bumped down to second on the list so op around 11am.
The nurse could not find a vein to take blood so the surgeon has now came and took it. She has to have blood tests as she has had cancer she has now been told.
We had one lovely night away in Cromer but Liz had very bad hip pain on the new bed in the motor home so we came back the next day. We slept the next 2 nights in the motor home at home to try and get the bed correct. The mattress cannot be to thick as it will not fold away into the roof. Hopefully all sorted now.
Its been raining hard here since 10pm last night and its forecast to last all day today as well with high winds later so hopefully no tree's will blown down and block the roads!
That's it for now.
Take care,
Peter
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Hello adagio,
Thank you for popping in to see us when you must have so much on your mind.
It is very good news that you have recovered from the cardiac catheterization. It looks as though you were really unlucky to have such a problem and that it has taken so long to heal.
Raymond and I will certainly agree with you about not taking statins. It seems to have become routine to dish them out like Smarties, to everyone 60 and over, and getting to a younger and younger age group. We had always resisted them but when Raymond was admitted to hospital and had that three weeks stay he was given statins on a daily basis and no one ever asked him if he consented to take them. In fact, his body must have gone into shock because he was given all sorts of medication that he had never taken. This continued during the week when he was in the hospital in London. All this medication continued on prescription when he came home and we were not happy. The statins had all kinds of nasty side effects (atorvastatin) and he stopped taking them within three weeks. He has also stopped taking the other drugs, clopidogrel (anti platelet) that caused him a lot of bruising, lansoprazole (anti stomach acid), instead of this he has just continued taking probiotics. He stopped taking diuretics weeks ago and he was not meant to be on them long term. He is just taking low dose soluble aspirin and a beta blocker, bisoprolol. He feels fine except for a slightly swollen ankle and foot, which we think might be lymphoedema as a result of the surgery on the leg.
Because of Covid-19 he has not really had any post surgery care and no cardiac rehabilitation. We have done it all by ourselves. I hope this information helps. Remember, adagio, that, as we did with our breast cancer treatment, we asked lots of questions and became fully informed, the same applies with all medical treatment.
It is a pity that you are having to wait for an appointment until October or even November. The same thing is happening here and everything is behind because of the virus. I think it has gone over the top and we shall have to live with the coronavirus. As you say, the delay enables you to deal with the heart valve issue emotionally and psychologically. We do understand the shock of this to you. Raymond ending up with a triple coronary bypass shocked both of us. I think, especially me, that I felt defeated and felt that having taken care of ourselves all of our life this was not fair. I still feel traumatised by it and worry about Raymond going anywhere by himself, especially to the hospital. We have not been back because of the virus, but at some point he will need to have his pacemaker checked, but not under the present situation where he is supposed to go alone.
It is good that you have very few symptoms and you should be fine as long as you do not overdo things. Take walks but keep away from anything uphill and just continue your healthy living. Of course, do not lift heavy items. Raymond was told to avoid those two things.
As for the coronavirus, nothing our government does seems to make sense. It has deliberately caused a recession, after ten years of austerity, and we are going to have massive unemployment and even more poverty. The rules and laws the government brings in are contradictory and confusing. We must not meet in groups of more than six, but it is alright for the toffs to go grouse hunting! We are also careful but not paranoid. We have had flu epidemics that have been far worse but we have not brought the country to a halt.
We are going to get flu jabs, but I still have reservations. I had one in 2005 because of the breast cancer and chemotherapy treatment, and then had one in 2017 and have not had one since. If I get a flare up with lymphoedema, as I did in 2017, or was it just a coincidence, I shall just wear a compression sleeve until it goes down.
You asked about the sternum. Yes, Raymond's sternum was cracked open for his heart surgery. No one mentioned minimally invasive approach for his bypass. He has a long scar down the middle of his chest. It has healed and he has had no problem with it, but I do not think the scar will ever disappear. He has two smaller scars just below the chest where they put in drains. He was put on a heart-lung machine for the surgery.
I do hope this helps, adagio. Try to keep busy while you are waiting and come and talk to us. Remember that this kind of surgery is very routine these days. Raymond's friend in the hospital in Exeter has only just had his artery and valve surgery in August. He is recovering nicely and waited from January to August to have what was classed as emergency surgery! I think Raymond was lucky to get his before the virus burst upon the scene, but this was only because I complained, I think.
We all miss Mary on the thread, but, as you say, she may want to move on.
Look forward to your new little grandson and also do enjoyable things.
That is all for now.
Love.
Sylvia xxxx
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Hello adagio,
Good to hear your latest news. I think you should have been warned about the possibility of groin problems following cardio catheterization. Having so much bleeding followed by painful stitching is a trauma we could all do without, never mind the longer term pain and swelling. I'm very glad that you now have some time both to get your breath back and to look forward to the new baby. My grandson will be five just after Christmas and I remember the joy of meeting him for the first time. He was followed two years later by a granddaughter and I felt exactly the same sense of joy and amazement at this tiny new person as I did the first time around.
Covid is out of control here with new infections rising day on day. Like you, I carry on with daily life but keep the virus in mind and avoid close contact with people I don't know. Unfortunately cancer diagnosis and treatment in England was slowed right down, as hospital wards were emptied to make room for coronavirus patients. It's now too late for some as their cancers have progressed and are too late for surgery to be effective.
I do hope the appointment with your surgeon comes before the end of October so that by Christmas you will be well on the road to recovery. Your first Christmas with your new grandson.
Keep looking forward adagio.
With love and prayers,
Gill xxx
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Hi Peter and Liz,
I was at the Norfolk and Norwich all yesterday afternoon and thought about Liz's operation, hoping that she'd be safely back on the ward by then. Hope you were able to get her safely back home and resting. What lovely weather you had for the journey to and from hospital!
Keep well,
Gill x
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Hello Sylvia,
we could do with some new patients posting here and staying to contribute from time to time. This would help to keep our knowledge up to date - approaches by breast cancer units, surgery/treatment waiting times, what people are doing to help with both the short and longer term effects of chemotherapy, and so on. There is often a considerable gulf between what is supposed to be offered to women from the day they discover a breast lump or other abnormality, to what is actually offered - both in the UK and in other parts of the world. Here in England the disparities between NHS hospitals is a national scandal, it really is a postcode lottery.
I hope Jackiey drops in to let us know if she had zoledronic acid and if she did, what side effects did she have?
Yesterday was the worst weather Norwich has seen for a very long time, extremely cold and windy with rain coming down in horizontal sheets all day! I was drenched by the time I'd walked from the car to the hospital. My mammogram was done on time. An assistant was in the room with the photographer which is a first for me. She had a persistent dry cough so I just have to hope she'd been tested for covid.
My mri was organised for an hour after the mammogram - very impressed with the speed of my appointment and the convenience of the timing. It wasn't done in the usual place and I had to go outside and face the rain again. Waiting rooms had very few patients as all appointments were on time, (it seems that this can be organised during a pandemic, but not in normal times), no temperatures taken though. The mri technician collected me and took me outside and across to the mobile mri unit. I was glad to get out of my drenched clothes and into a hospital gown. My b/c support nurse had said the mri with contrast would give a clearer picture. I wasn't given an injection of contrast, just a couple of cod liver oil capsules taped to my neck and mid spine. Three weeks until the results are available.
Fingers crossed that the flu vaccine is available for you and Raymond next Wednesday.
As predicted, track and trace still isn't working, I shall wait for Keir Starmer to ask Johnson why at PMQs, he won't have a clue, won't answer the question but will accuse Starmer of criticising the NHS. It's like watching Groundhog Day.
Take good care of each other.
Love,
Gill xxx
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Hello Peter,
I do hope that everything went well for Liz's operation and that she is now back home recovering.
I was surprised to read that she had to have blood tests because she has had cancer. I suppose this is now routine.
I was glad to read that you managed to have one nice night away in Cromer but sorry to learn that Liz suffered from bad hip pain, so you came back home. I do hope you managed to sort out the mattress problem.
Yesterday was dry but very windy. We walked into town but got very windswept! Today has been less windy but sunny. It has been quite cold as well. There is a definite autumn feel about everything.
That is all for now. Keep well, keep safe and best wishes to you and Liz.
Sylvia
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Hello Gill,
It is always a pleasure to read your posts, but, as you say, we could do with some new patients posting here and staying to contribute from time to time. I do understand that patients want to move on after a cancer journey, but I do feel it is not right to get what you want for yourself, and then leave. I think you should offer something back to others who need support if you have received support. Without regular posters you cannot have worthwhile threads. We also need new patients so that we know when things are being done differently, what new drugs are being introduced etc. We need to know whether breast cancer treatment is making progress so that a cancer diagnosis and journey become less frightening, less traumatic and leave patients with fewer long-lasting side effects. I have tried to keep up with everything since I was diagnosed in 2005 and quite honestly I think everything is much the same, that progress is slow, but there seem to be more and more drugs and more and more women being diagnosed.
I am always looking for information and ways to keep the thread interesting, but it is sometimes difficult with fewer patients not posting, but just viewing. It is easy to divide up the different parts of the cancer journey, diagnosis, surgery, chemotherapy, radiotherapy, check ups, how to deal with side effects, moving on groups and so on and so forth, but we need questions and enquiring minds and the decision to take control of your treatment and well being.
I think the least a patient can do is to let us know when they decide to leave. Courtesy costs nothing.
At the moment, with the coronavirus, I would think that the whole cancer process is going very slowly.
It will be interesting to see whether Jackiey drops in to let us know whether she decided to have the zolendronic acid and whether she has had side effects. I do not think that when it comes to taking zolendronic acid there is any difference between having triple negative tumour status, a mixture or triple positive. It is a preventive treatment to protect the bones and you can be offered it without having breast cancer.
I was thinking about you yesterday as I heard on the weather forecast that you were in for terrible weather. I was sorry to read that you had got drenched. I was glad to know that your mammogram got done on time. I was surprised that there was an assistant present and not happy that she had a dry cough! I do admire you for having an MRI scan. I have never had one. You are having to wait a long time for the result! Can you explain what the couple of cod liver oil capsules taped on your neck and mid spine were for?
I am hoping Raymond and I will get our flu vaccine without any problems. The procedure at the doctor's and dentist's is very slow and tiring, but, of course, inevitable. There must be a lot of masks, sanitiser containers, aprons etc. going into landfill and that cannot be good. I still see masks discarded on roads and pavements here. I do wonder, also, about breathing in all the stuff that is being sprayed around everywhere in waiting rooms etc.
That is about all for now. Take care, Gill, and thank you for the effort you make on the thread.
Keep safe and keep well.
Love.
Sylvia xxxx
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Hi All,
Liz's op went well. Liz was the second one in but the last to leave last night at 8pm as they did not want her to leave but Liz had already made her mind up she was not staying.
Liz slept well last night and has been up walking about and watching tv today. Liz has strong pain killers (Dihydrocodeine) but a side effect is feeling sick so we are changing it today to paracetamol and Tesco migraine tablets (Ibuprofen and Lysine). So far so good. Since changing Liz has felt better with no pain even after eating a Tesco steak pie.
The nurses could not find a vein to take blood yesterday so the surgeon had to come and massage her arm to get the blood flowing and bring up a vein. This was a result of chemo.
Liz said the hospital seemed very safe as far as Covid is concerned but she is glad she was not having the op in the winter months.
The roads were flooded driving in yesterday but were ok on the way home last night.
Peter
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Hello Peter,
Thank you for letting us know that all went well with Liz's operation. We all hope that she will recover quickly and that you will be able to have enjoyable times in your new campervan.
It is good news to know that Liz felt that the hospital was very safe as far as Covid is concerned.
I think we all understand Liz's feeling of being glad that she was not having the operation in the winter months.
I do wonder what everything is going to be like during the next six months and I think we shall all be trying to push the months ahead to next spring. I must say that yesterday here in Exmouth it felt like a spring day and spring flowers were blooming instead of going to sleep.
I think tomorrow we shall be getting the rain that you have already had.
Sending best wishes to you both.
Sylvia.
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Hello Sylvia,
This is just a very short note to let you know that I'm still around. As always, time is the problem.
Weather in South Norfolk is cold, grey and wet. We had a burst of sunshine yesterday afternoon and Michael and I had tea in the conservatory, probably for the last time this year as it's unheated. The log burner is on, the house is warm and the two cats are asleep on the bed - always a sign that the rain has set in for the rest of the day.
Hope all is well with Raymond and yourself. Enjoy the last of the sunshine!
I'll write more later in the week.
Love,
Gill xxx
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Hello Sylvia,
It's bright and sunny here after all the rain. I ought to do some work in the garden but have to get on with paperwork and indoor chores instead, I'm forever trying to catch up. We have visitors next week, so my posts will be short for a while, as I try to fit everything in.
You asked about the use of cod liver oil capsules for mri scans. As far as I can see, they would have been used to highlight my spine and produce a clearer, more precise picture. The capsule taped to my upper spine would have helped, but the other capsule was taped to my huge plastic gown, somewhere vaguely near the mid spine. The whole spine was scanned, but no capsule was placed on the lower spine. This puzzles me, but there was no time to ask questions. I have an appointment with my breast surgeon on Friday so I'm hoping that he can explain.
I'm looking forward to PMQs today, but despair of making any sense at all of Johnson's rambling and untruthful responses. The Speaker is hopeless and even chortles at the PM's lies and rants. Clearly Mr Speaker still has his eyes on a peerage, despite the amount of criticism he's receiving in the newspapers.
It is estimated that almost a million women have missed breast screening in the UK as a result of the pandemic. All those opportunities to catch cancer at an early stage lost. I can't see how the NHS can ever catch up with the backlog and I'm afraid that some women will simply fall by the wayside. Waiting times for surgery after a cancer diagnosis were at the very limit of NICE guidelines in many hospitals long before Covid-19 appeared. No doubt some women will pay privately for mammograms and surgery and who can blame them? I fear more than ever, that the NHS will be sold off and an insurance system introduced, but where will this leave the many people trying to live on the national minimum wage or a pension?
Some bad news and some good news. A molar on my lower jaw has suddenly become painful and discoloured at the base, I fear the worst. I've telephoned my dental surgery and although fully booked I've been fitted in for the first appointment on Monday morning. More importantly perhaps, my dentist will do a filling in certain circumstances, rather than the more coronavirus safe extraction. There's still hope!
I do dislike all this waiting for mammogram and mri results. I'm even becoming anxious about meeting the breast surgeon on Friday and then there's the dentist to look forward to after the weekend. I shall be very glad to get back to some sort of normality!
I think it's worth pointing out again, that despite the title of our thread, people from all over the world are welcome to join in. Occasional posters are welcome too, it's always interesting to see how people are coping or moving forward with their lives. I think we are all wondering about Marias as we know how difficult her life in Colombia is. Just visiting the hospital or getting her drugs on time must be a nightmare for her now that coronavirus has been added to the mix of violence and poverty.
That's all for now.
Keep well,
Love,
Gill xxx
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Hi, Sylvia, Gill, Adagio, Kath et al,
I have been reading posts, I can't believe how quickly the time has gone since I last posted! Let's say I skimmed them rather than fully absorbed, to be honest. Okay, I just typed 2 sentences and then had to go see why the puppy is so quiet, and found him laying by the door looking wistfully through the glass. But, if I try to shoo him outside, he won't go, because I am supposed to be his constant companion. I have a word of warning for any single person wanting to adopt a puppy, this is much easier if there are at least 2 of you. He is a nice little dog though, and he makes me laugh when he is not chewing through electrical cords or my shoes.
I have seen many articles written on Cancer Care suffering during Covid, especially in the UK. Apparently it is also a problem here, but I don't know where. I don't know anyone who is having a problem getting care of any kind, although there are people here who are reluctant to go to a doctor's office. A neighbor who lives just down the road from me is in the hospital with Covid, and is very ill. The local schools are very upset, they have tried to open but it's not going very well. Yesterday I drove past soccer fields filled with children and adults, sports have been going on as normal but I suspect that is where many of these positive cases are passed on. I mentioned my theory to a couple of parents of school children, they did not comment. Probably because sports are so widely enjoyed by their children. No answers here from me, we are all just feeling our way, it seems.
Gill, I read about your mammogram and MRI. I was very puzzled by the use of the cod liver capsules taped to your spine. How does that work? I hope all results are excellent.
Our church is muddling along as with everything else these days. The priest we have now is from another country, seems very nice but his sermons are unintelligible due to his thick accented English. We are all relieved when the deacon does the sermon. The young lady who plays organ in our choir is getting married in November, and is trying to have a "normal" ceremony and reception. I hope this all goes well, I will attend but will be a tad cautious about it.
My absence here is not because I want to move on, since I consider you all dear friends. It is just that I have gotten much busier. Last year I was quite sidelined with 2 shoulder surgeries, and didn't get many things done that I wanted to do. This year I have been trying to play catch-up with many things, indoor and out. Yesterday I had a man here who is going to do some light remodeling of my house, although he will not be able to start his work for some months. The day before that I had a man here who is going to do some landscaping that I cannot handle, he has already started his work. These are things I thought I would someday be in shape to do, but I have accepted the fact that I can only do so much. A good friend of mine was hospitalized with blood infection brought on by bladder infection, she is now home and I spent some time with her yesterday. She will have a long recovery, fortunately she has a large network of family members who live near her. My puppy also is quite demanding of my time, he must have long walks or he is too active in the evenings when I am tired out. Today I am driving to see my acupuncture doc, I am only seeing him about every 6 weeks now. Tomorrow I am taking a beagle puppy that belongs to my niece to the vet for routine vaccinations. She and her little family adopted the beagle but now find they don't have time to attend to his needs completely, so I am trying to help out. Monday I got a steroid shot in my right knee, I will get one on the left knee in 2 weeks. My doc is wanting me to have steroid also put into my shoulder which has been bothering me the last few weeks. Haven't decided on that yet.
Sylvia, I don't blame Raymond for wanting to get off some of the drugs, it sounds as though he didn't need them anymore anyway. I wanted to say I also get slightly swollen ankles on some days, though I am quite thin. I blame it on varicose veins and yes, it could also be some lymphedema for me as well, although I don't seem to have it anywhere else.
Adagio, I am so glad you are doing well, and congratulations on your new grandchild!
I will close for now, but am happy to talk with all of you again! It is nice to see Kath here and peterandliz back, I wanted to tell Peter that it is very difficult to get bicycles here now because of the Pandemic and increased demand. Perhaps this is true everywhere.
Talk later, love, Mary
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Hello Gill,
Thank you for your latest post. I do understand about how busy you are because Raymond and I are in the same situation. It seems we just do not havenough time to get through the lists that I keep writing out every day. As you say, there is always paperwork, indoor and outdoor chores, and other things that just pop up. I do understand that your posts will be short for a while as you haave visitors. The most important thing is to enjoy your time with your visitors.
I am really intrigued about the use of the cod liver oil capsules for your MRI scans and I look forward to the explanation from your breast cancer surgeon. Raymond says it all sounds a bit fishy!!
It looks as though neither of us can stay away from PMQs but I can tell you I get so annoyed with Boris Johnson that it does not do my stress levels any good! I try to see the whole session but often I get interrupted by a knock at the door or a phone call. I did manage to see it through today and I thought BJ broke all records for talking rubbish and not answering questions. I thought the Speaker should have told him to leave the chamber for the way he tried to belittle Keir Starmer. I think the Speaker is useless but at least he made that speech at the beginning of the session to remind the government that they are answerable to Parliament, but I was not impressed with the boring way the Speaker read out his statement. I say bring back John Bercow!
What with BJ and today's performance and the shameful first debate between Trump and Biden I just wonder how we got so dumbed down?
It is truly awful that almost a million women have missed breast screening in the UK as a result of the pandemic. I did listen to an interview with one such woman on the Radio 4 on the 1 pm news. She has ended up with breast cancer. All I can say is that women are going to have to start protesting over this and get lots of publicity. It brought back memories of when I was diagnosed and women were fighting to get Herceptin. They won their battles but they really had to fight.
Like you, I do fear that we are going to end up with an insurance based health system that many people will not be able to afford. That is OK because BJ will put his arms around you and all will be OK. He is going to perform so many miracles that this country will be the envy of the world.
As far as trying to keep an eye on your breasts during all this Covid madness, I can only say to women looking here, that I keep an eye regularly on my left breast and the area where I had the mastectomy in 2006. I look carefully at the left breast, looking for anything that does not seem normal for me, such as swelling, inverted nipple and anything by touch that does not seem normal. For the surgery area on the right, I run my hand over the area, imitating my oncologist and breast cancer surgeon feeling for anything that is not smooth and keeping an eye for any rashes especially on the scar line that could indicate recurrence. I always feel under the arms and around the neck for swollen lymph nodes.
I can understand your feelings of anxiety about Friday. There is nothing worse than waiting. I do not think the medical staff have any idea of this unless they have been through something similar.
I can sympathise about your having to go to the dentist next week. Raymond and I have both been spending time at the dentist and I shall write a bit about this later. At the moment I need to take a break but I shall try to get back.
It is so wonderful to see Mary posting again. I shall answer her later as well.
Keep well and keep your spirits up.
Love.
Sylvia xxxx
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Hello again, Gill,
I do hope everything will go well on Friday and then again on Monday with the dentist. During the lock-down with the dentist I had bad toothache with a lower back molar and had to do salt rinses and take some paracetamol from time to time until the dentists were allowed to open up again but with strict Covid guidelines. I was in touch with him and I got a quick emergency appointment and had to have it removed. I am not with the NHS for dental treatment because having needed periodontal treatment for some time, and this not being done on the NHS at the time, I am with a private dentist. My tooth was removed and I had to arrive at the dentist's just five minutes before my appointment, ring the doorbell, a receptionist opened it (in full Covid gear) took my temperature, asked a load of questions about the virus etc. I was taken to the dentist who explained they could not do anything that created an aerosol, so fillings were out. My tooth was a bit loose, so it had to come out anyway. Raymond also had a problem and had to go through the same procedure. We were allowed to wait for each other, provided we wore a mask, which we did. The whole of the waiting room had had everything removed except for a few chairs well distanced from one another. We bot had to pay for treatment, obviously, but we also had to pay a Covid charge. It is costing dental surgeries so much for equipment, masks, visors, sanitisers and so on. I do not know when it will get back to normal.
I do from time to time point out that the thread is for anyone all over the world despite the title. I think it has benefited from all the posts from different countries. No matter where we are from, we all have or had breast cancer. It is interesting to compare experiences and treatment. I am sometimes amazed how little some of the Brits know about their treatment, although it is much improved since 2005 when I was diagnosed. I do remember my breast cancer surgeon saying at the time that I was most unusual in asking questions and that most of her patients just wanted to get the cancer treated and for her to do everything. It cannot be like that now, I think, because of the internet and because everything is more open. I think we should all be interested in what is happening to our bodies and take responsibility for them.
I keep wondering about Marias. I often get snippets of news about Colombia and it is never good. I do hope she will come back to us when she can. As for Hanieh I really think that we shall probably not hear from her again. It is sad, but there is nothing we can do.
That is about all for now. It feels so much like Friday to me today! The weather is pretty miserable, but the rain will do the grounds a lot of good.
Take care, regards to Michael.
Love.
Sylvia xxxx
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Hello Mary,
It was so nice to see you back on the thread. I can understand how busy you are with your puppy. People tell me that looking after puppies is as time consuming as looking after a baby and that it takes a lot of time to train them.
I would think that all aspects of the medical world have suffered because of Covid-19. It is obvious that the NHS here has and I think it will take years and years to recover, if it ever does. There are long, long waiting lists for all kinds of treatment and surgery. It was bad enough before Covid, so I dread to think what it is like now.
I was sorry to read that one of your neighbours was ill in the hospital with Covid. Did he or she have any chronic illnesses, especially respiratory illnesses such as COPD or diabetes? If so, they are much more vulnerable. Here in the UK we are told it is mainly younger adults that are now being infected but are not needing hospitalisation. Our government has not handled the pandemic very well and was too slow in the beginning. There are various theories about this virus but who knows where the truth is? The main trouble seems to be that the various diktats about how to deal with the virus are full of contradictions and exceptions, so nothing works. Schools were opened up as well as universities but no tests were carried out before this, although the government had months to test, and then they were surprised when there were outbreaks in the schools and universities! The tests do not seem to be working anyway and there are not enough of them. The government did no preparations.
I think we all understand about being busy. There are always chores inside and outside our homes, not to mention repairs etc. there is always paperwork that needs our attention, as well as shopping and meal preparation.
I do hope we are all eating healthily and remembering the Rainbow/Mediterranean diet, and getting enough exercise and rest and relaxation.
Do you have time for any leisurely reading or what do you do to relax?
Raymond is doing well but I think the shock of the surgery and the long recovery, coinciding with the coronavirus and getting rid of the car, set us back somewhat. We have done a lot of walking because of avoiding public transport due to Covid. The swollen foot and ankle could be to do with veins or lymphoedema after surgery.
I am sure Gill, adagio, Kath and Helenlouise as well as Jags56 and Peter will be glad to see you posting again.
Look after yourself, Mary and do not overdo things.
Love and best wishes.
Sylvia xxxx
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HI Gill
I think my last post and your last post were put up about the same time, thus I didn't see your cod-liver oil capsule explanation before I wrote my question about it. I must confess this sounded odd to me, at least I'm sure it was inexpensive for the NHS!
I hope your dental appointment went well, and your mouth now has a clean bill of health. I also hope your MRI and Mammogram test results are soon reported to you, and they are also good results.
We are having a bit of an explosion of Covid cases in our local area, it seems to have coincided with the restart of school. I guess it is possible that children are coming home with infections, just a thought. For months leading up to now, we have been relatively untouched, no longer. We have even had a Covid death in our small Parish.
I sympathise with your despair over Politics, here our Presidential election season is an ever-unfolding drama. The news of the day is that our President and First Lady have tested Positive for Covid. The death of a long-seated Supreme Court Justice added the drama to last week. The first Presidential debate devolved quickly into a shouting match, I only watched for about 10 minutes, I couldn't take it.
Today I am to sit in my house for 4 hours, waiting for a Satellite Dish service technician. An hour has passed already, I do hope he comes before the 4th hour, or even the 3rd hour! I dropped the puppy off at the doggie daycare, since I can't even leave to take him for a walk. At least he will be well-exercised. While there the owner commiserated with me about all his employees being out sick, and one of them being tested for Covid. So nowhere is safe, apparently, I don't know why I'm surprised.
I hope all is well, and you enjoy your visitors. Talk to you later,
Love, Mary
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HI Gill
I think my last post and your last post were put up about the same time, thus I didn't see your cod-liver oil capsule explanation before I wrote mine. I must confess this sounded odd to me, at least I'm sure it was inexpensive for the NHS!
I hope your dental appointment went well, and your mouth now has a clean bill of health. I also hope your MRI and Mammogram test results are soon reported to you, and they are also good results.
We are having a bit of an explosion of Covid cases in our local area, it seems to have coincided with the restart of school. I guess it is possible that children are coming home with infections, just a thought. For months leading up to now, we have been relatively untouched, no longer. We have even had a Covid death in our Parish.
I sympathise with your despair over Politics, here our Presidential election season is an ever-unfolding drama. The news of the day is that our President and First Lady have tested Positive for Covid. The death of a long-seated Supreme Court Justice added the drama to last week. The first Presidential debate devolved quickly into a shouting match, I only watched for about 10 minutes, couldn't take it.
Today I am to sit in my house for 4 hours, waiting for a Satellite Dish service technician. An hour has passed already, I do hope he comes before the 4th hour, or even the 3rd hour! I dropped the puppy off at the doggie daycare, since I can't even leave to take him for a walk. At least he will be well-exercised. While there the owner commiserated with me about all his employees being out sick, and one of them being tested for Covid. So nowhere is safe, apparently, I don't know why I'm surprised.
I hope all is well, and you enjoy your visitors. Talk to you later,
Love, Mary
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Hello Sylvia,
Thank you for your two interesting posts. I'm very glad to have someone who shares my views about Boris Johnson and the Tory Cabinet. The vast majority of my friends remain staunchly Conservative and believe that Starmer couldn't have handled the pandemic crisis or the brexit negotiations any better. I have to steer them away from the subject of politics for the sake of my blood pressure.
My meeting with the breast surgeon went well. The waiting room, which is usually full, was more than half empty and my appointment was exactly on time. The examination was clear and he had last Friday's mammogram on his computer and said that was also clear. I had a list of questions, but didn't have time to ask about the cod liver oil capsules used for mri scans so I'm afraid it remains fishy. Dear readers, please blame Raymond for the (ahem) joke.
Having noticed that many forum members from America and Canada have their blood checked for tumour markers, I asked my surgeon why I hadn't been offered this test and he said that they weren't used for breast cancer. I would be interested to know if anyone in the UK has had this test.
I was surprised to see a note at the bottom of my appointment letter stating that all NHS patients have a right to Consultant led treatment within 18 weeks. Have the goalposts just been moved? Eighteen weeks is far too long to wait for cancer surgery or serious heart surgery. What a mess.
My dentist (private) is excellent and offers emergency appointments, dental hygienist sessions following every check-up, annual x rays and a range of other treatments not available on the NHS. Waiting times are short, there's a free carpark and he's just a ten minute drive away. I wouldn't go back to an NHS dentist, though Michael is happy enough with the service offered by his NHS practice in the centre of Norwich.
Raining again today. I visited the local garden centre yesterday, hoping to buy some more Winter pansies. The place was full and I didn't want to take the risk just for a few plants. Waitrose had a queue outside, so I didn't buy any groceries either. Arrived home to a sitting room full of smoke and what I think is a blocked chimney. This is just what I needed when visitors are expected. Thank heavens we have some electric room heaters that can be wheeled around - we don't have any other form of heating.
That's about all for now.
Take care of each other and enjoy a peaceful weekend.
Love,
Gill xxx
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Hi Gill,
I just wanted to comment that I also asked my MO about tumor markers, she replied that doing this brings unreliable results in checking for Breast Cancer. Also, I know 2 women who do regularly check their tumor markers, and sometimes they are high and other times normal, they get anxious about it but so far everything has been okay.
Hope you are no longer smoky!
Mary
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Hi Mary,
Relieved to see you back here, but not surprised that your puppy is taking up so much of your time and energy. You'll be sorry when he loses all his annoying little quirks and starts acting like a well trained adult. Yes, young dogs are probably as trying and time consuming as young children, but few toddlers resort to chewing shoes or carpets. On the other hand, dogs are loyal, keep you company and rarely slam doors, play loud music or ask for money. Both species sulk and wake you up in the early hours.
Thank you for explaining why hospitals may not want to test breast cancer patients for rising tumour markers. We have enough to worry about without unreliable blood tests.
Hope your satellite dish technician eventually turned up. Our chimney expert has not responded to the voicemail we left, he'll phone on Monday with any luck. Yes, the house still fills up with smoke if we light the log burner, fortunately it isn't particularly cold here.
After all these months of your area being Covid free, the wretched thing has finally caught up. Sad that a parishioner has died, I hope everyone else recovers and suffers no long term effects. I wonder if you feel safe going to Mass? We went to Sunday evening Mass last week and seated ourselves round the corner well away from everyone else. About ten minutes into the service a family with half a dozen children came and sat two rows behind us - worrying as a growing number of schools in Norfolk have recorded cases of coronavirus over the last week. In some of the coastal towns the infection rate has risen by 50%. Much of Northern England is back in lockdown and the rest us us are living under the rule of 6. This means that the two of us can only mix with a group of four other people. Eight of us had planned an afternoon tea get together this week, but had to cancel. No idea what's going to happen at Christmas. Weddings are now down to 15 people, but funerals can be 30 and we can still go to a pub or restaurant! Doesn't make much sense, but that's the norm for Boris Johnson and his gang.
I still have the dentist to look forward to on Monday. Wouldn't you think that now we're living longer, evolution would have caught up and provided a third set of teeth for the over sixties?
Keep safe and well Mary.
Love,
Gill xxx
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Hi All,
Mary, We had a shortage of bicycles a few months ago and one company that sells electric trikes sold out 3 months ago and their next delivery is not until after Christmas and the price has jumped from £1900 to £2400 retail.
Private dentists and doctors are open because they are not paid unless they are working. £2000 furlough a month is only pocket money to them so need to work. NHS dentists and doctors have been paid NOT to work on furlough. What has all our NHS doctors, surgeons and consultants been doing the last 6 months that we have not been able to get an appointment? I have had 2 diabetic and 2 arthritis appointments cancelled. I should have a blood test once a month because of the harshness of the drugs I am on (metatrexate) but I have not had a blood test since February. What are all the nurses doing at the local doctors surgery instead?
Covid and politics, my favourite subject!
Covid
The UK death rate is high but most other countries do not count everyone that has died of Covid (even the Germans).
India claims they have had 101,000 deaths! They have actually had 1 million people die of Covid.
Russia also have very strict rules around Covid and only about 1 in 10 Covid deaths are counted in Russia.
Amount of tests carried out in order of country population.
Germany 17,000,000
UK 25,000,000
France 11,100,000
Italy 11,700,000
Spain 12,700,000
Even though so many people complain about the lack of testing in the UK we have tested more than any other country.
A report came out in Germany 4 months ago stating it is not possible to catch Covid from supermarket surfaces. The took 1000 swabs in a German supermarket in a town that had a high percentage of Covid but could not grow Covid on a jell plate in the laboratory. This never made the news.
Finally today on the Andrew Marr show today American scientists have come up with the same answer. The story is in the Sunday times today.
Its transmitted by people to people getting to close.
This is why I have been doing the shopping even though I am one of the vulnerable ones. I just go to Tesco at 7am when it opens so the air inside is fresh.
I also go to the post office 5 days a week to post out parcels.
I would also like to point out all other European countries are seeing a increase in Covid figures despite their lack of testing compared to the UK. We have been stable here in the UK for the last 10 days. We are doing a lot better than the rest of Europe.
Because of increased testing being carried out our figure is very good. We had 6000 cases a day a few months ago but were only testing 50,000 cases a day. We have 7000 new cases a day at the moment but we are testing nearly 250,000 people a day so as a percentage that reduces the 7000 down to the equivalent of 1500 cases per day.
Please remember we could have had Jeremy Corbyn and Labour in charge!
I am not a Boris fan but am a Conservative.
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Politics.
As I said in my last post I'm a Conservative but not a Boris fan.
I did watch him this morning on the Andrew Marr show and he spoke very well with some very good points (first time ever).
I also watched Keir Starmer 2 weeks ago and in a 20 minute interview said nothing and when pressed by Andrew how much he would spend on the economy at this moment in time his answer was " I will tell you in 2024 when we are campaigning for the next election". He speaks very well and its very easy to say what he would have done after the event but in truth he could do not better.
We are testing more than any other European country that has to be a good thing.
The good news is Boris will not be prime minster in a few years time. He was voted in because he brings the happy, feel good factor which is what this country needed. Remember Boris won seats that have been Labour seats for many many years.
Boris is selfish and wants to be remembered in history. He has done this so will want his easy life back in a few years.
Boris has the backing of the working man something the Labour party and Jeremy lost. The working man wants his country back, this was only offered by Boris and Nigel Farage. All masterminded by Dominic Cummings.
Dominic is no different from the Labour spin doctors of the past but he has his own agenda. He wants to bring down the house of Lords and people like Boris but needs a puppet to do it.
Politics have not been this interesting since Guy Fawkes. This time I think Boris and Dominic will not win but the conservatives will. When we leave the EU with either a good deal or a no deal I think this will keep the Conservatives in power for at least another 10 years as this is what was voted for by the working man.
If only we had someone like Margaret Thatcher to see us through all of this!
I thought I would give everyone something to read on this Sunday Morning.
Peter
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Hello Gill,
Thank you for your latest post. I can understand about sparing your blood pressure. I am the same. Remember that we are told the two most dangerous subjects for discussion are politics and religion. We have to remember to live and let live and always keep in mind that we are, above all else, a breast cancer support thread. We have discussed Covid-19 a lot, but then it is connected to cancer in general because of the way it has completely taken over and has had a very bad effect on cancer diagnosis, care and general treatment. I watched the repeat of Dateline London this morning on BBC News channel and it was being stated by one of the journalists that we are probably going to end up with more deaths from illnesses such as cancer than from Covid-19, due to lack of treatment.
I was so glad to know that all went well with your breast cancer surgeon, and that your appointment was on time. Do not worry about the cod liver oil capsules. It was much more important to ask the questions that you had on your list. If you learnt anything that you think we ought to know, then it would be good if you could share them with us.
I was interested in your query about blood tumour markers. I did ask my oncologist about these tests at one point, because I had noticed on the TNs that American women seemed to be having them. My oncologist told me that they were not reliable because they could go up and down from one day to the next. I accepted that and decided that having them done often would be just another stress factor. I have the same attitude to blood pressure. It can vary a lot depending on different situations. I usually have normal blood pressure but if I feel stressed it can go up. Raymond is more laid back than I am most of the time, but I will always speak out very strongly if I feel there is injustice being done. I gave a bank and an electricity company a piece of my mind on the phone and in writing this past year, and won my case, so was given apologies and some compensation. Raymond says I am like a dog with a bone when I know I am right!
I certainly agree that eighteen weeks is too long to wait for cancer surgery or serious heart surgery, but I saw this kind of thing going on when Raymond was in hospital. Someone he got to know when in the hospital waited six months for what was classed as a bypass and valve surgery, and then he only got it because he had a dire emergency at home and ended up in A&E!
I am also very pleased with my private dentist. Like all dentists he was closed down during many months of lock down, but he corresponded with me and gave me an emegency appointment as soon as he was able to open up and operate under Covid conditions.
I was sorry to read that you were out of luck at the garden centre and at Waitrose. I think the panic buying has set in. I could see this from just having done our delivery order at Tesco's.
I have to end now.
Love and best wishes to you and Michael.
Sylvia XXXX
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Hello Peter,
Thank you for your two posts. They are always interesting.
I was sorry to read that you have had two diabetic appointments and two arthritis appointments cancelled, as well as your monthly blood test to keep a check on the methotrexate drug. It all seems very remiss. I know that our GP surgery here in Exmouth has been functioning, but under Covid conditions. It has been the same for our dentist. It was very difficult to get anyone to answer the phone at the GP surgery, even though they said they were manned. A few weeks ago now, the government said that GPs had to offer face to face appointments when requested, because all that seemed available were phone appointments or video ones! If that were me I would lodge complaints about your surgery. I do not know what the equivalent of PALS at the hospital is with GPs. I complained to PALS when Raymond was in hospital and there was immediate action. Someone I know here in Exmouth went to the GP surgery and banged on the door because he could not get any answer by phone. The banging on the door certainly worked! I have a cousin in London with type 2 diabetes and he has been having regular foot treatment at his NHS clinic, and blood sugar tests etc. at the same clinic via his GP. He has already had his flu injection. I hope this helps, but it seems there is no uniformity in the NHS.
As for Covid, it is difficult to know what the best solution is. Should it have been the herd instinct from the beginning (the survival of the fittest) or should it have been lock-down but proper lock-down? We shall never know!
The latest news seems to indicate that all this spraying of surfaces is unnecessary.
According to the news this morning there have been a lot more cases added here that had not been included before, due to a 'technical fault' we are told!
All we can do is to use our own common sense to keep safe and not spread.
As for politics, people will have their own views and there will never be agreement. It has been many years since any party has had a proper majority vote (>50%) in a General Election, so no real democracy. In this country and in the US we do not add up one person one vote.
I do hope Liz has recovered and I hope both of you have a good week. It is looking a bit dismal here with an excess of rain!
Best wishes.
Sylvia
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Hello everyone,
I am just popping in to wish everyone a good and meaningful week despite all the doom and gloom that is being thrown at us.
Gill, I hope all goes well at the dentist's.
Mary, keep with us and do not overdo things.
Adagio, have you any news about your surgery? Keep pushing, otherwise you will be left behind.
Kath, please keep us up to date with what is going on in Australia. Raymond and I have not yet been able to get ourselves a flu jab. Apparently we are running short here.
Helenlouise, I hope things are going well with you.
Jags56, I am sorry to read about the high number of cases of Covid in your country.
Marias and Hanieh, you will always be in our thoughts even if we do not hear from you.
Keep safe this week and keep optimistic.
Best wishes.
Sylvia xxxx
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