Calling all triple negative breast cancer patients in the UK
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Hello Sylvia,
Another bright sunny day here, still very cold overnight though and some of my early bedding plants have been killed by unexpected frosts. The farmers are worrying about the lack of rain, though the many fields full of oil seed rape seem to be doing well. Very attractive but not good for hay fever sufferers.
Your brother did well to run the Exmouth Labour office for forty years, especially during the Blair years. Michael and I have a name for the complainers but it's unsuitable for publication. Perhaps Johnson should be reminded of Kennedy's words. He appears to consider England his personal fiefdom with the peasants fit only to fill his coffers those of his chums. We contribute to the Good Law Project as it appears the only way to bring this charlatan to account.
My tablet computer is behaving very badly this morning and I've just lost a whole paragraph.
I'll get back to you after the weekend and also answer Mary.
Wishing you both a peaceful weekend.
Love,
Gill xxx
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Hi Mary,
I was surprised to hear that your skin has become such a problem. I associated thin, easy to bruise, easy to tear skin with people much older than yourself. The sun does so much damage and you have much more of it where you are. Chemotherapy definitely changes our skin. It worked wonders on my very oily face and my open pores/spots had disappeared by my second dose. Most post menopausal women don't have oily skin and the chemotherapy just dries their skin out, causing lines and flaking. I assumed that eventually the skin returned to normal. Does genetics also play a part in determining skin thickness? You're going to need to be careful in the garden and when out and about on the farm. What a nuisance!
I'm hoping that your plants and flowers haven't been too badly damaged by your surprise snow. April is always an uncertain month in the UK. It might be blue skies and warm sunshine all day followed by a hard frost during the night. For some reason I've lost several hardy plants over the Winter, odd as the Winter was very mild.
Michael's still waiting for the hospital to let his GP know what's happening with his heart. He'll email his GP for a phone consultation again on Monday. This time she'll have to insist on an appointment with a cardiologist. This should have happened more than two weeks ago. Covid is no longer an excuse as there are very few cases in Norfolk.
Take care Mary and enjoy your visit to your brother.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post. There is a strong cold wind here today and we desperately need some rain now. Unfortunately there is none in sight.
I do admire my younger brother here for running the Exmouth Labour Party, especially as I do not think Labour will ever get into power in Exmouth and probably most of Devon. It took up a lot of his time. Exmouth is very much a Tory place. Raymond and I helped out a lot with running fetes etc. and we were members for a time, but we are still supporters but not members. We have had it with all politicians.
We are now watching all the sleaze come out and watching the fight between Dominic Cummings and Boris Johnson. I do not know if any of it will help Labour because Labour has abandoned and disillusioned its core voters.
We are working through our usual list of things to do, which never seems to end.
We are not looking forward to next Wednesday when we are due for our second jab.
The forum remains quiet and I do wonder whether it will ever get back to normal.
I do hope that Michael gets his appointment soon at the hospital. This is not right.
That is all for today.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
It feels like February here, too cold for going outdoors and the sunshine has gone. No sign of much needed rain yet.
According to the latest poll, Forty percent of the British public don't trust Johnson. Does this mean that 60% do trust him? What does he have to do before people open their eyes to what's happening. Perhaps they won't care until they or their families are directly affected - perhaps not even then. We have the worst possible leader at the worst possible time. The latest revelations are disgraceful in a so called democratic country. Eton must be proud!
I had my second Pfizer vaccination last Thursday there was quite a wait this time but it was a sunny day so no one seemed to mind. No side effects other than a stiff arm. It seems fairly likely that we'll be offered a third jab in September. I'm usually thinking about my annual flu vaccination in October, I wonder if it would be safe to have them together? I think I'd rather leave a few weeks between the two jabs.
The forum is very quiet compared to when I joined in 2018. I think newly diagnosed women may be using Facebook. I very much doubt that they're being given more information from their hospital - at least not in England. Everything is so rushed and the information leaflets describing chemotherapy side effects don't say much at all about long term side effects or the possibility of dying as a result of treatment. The toxicity of chemotherapy drugs is played down and after diagnosis the only thing that seems to matter to us is getting rid of the cancer. Most of us only think about the consequences afterwards when we begin to experience them.
That's all for now. Hope Your vaccination doesn't cause any problems for you or Raymond.
Love,
Gill xxx
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Hello Gill.
Thank you for your latest post.
You always write interesting ones.
Once again, I agree with you with what you said about Johnson. It says a lot about the Labour Party when the worst government in my lifetime has only 40% who do not trust it. I think Labour lost a lot of support for sitting on the fence during Brexit. They cannot keep refusing to make a firm decision one way or the other. They messed about during Brexit and during the General Election. Labour has got to stop being all things to all people and pleasing none.
Raymond and I are hoping that the weather will be good on Wednesday when we go for our vaccination. I do hope there is not a long queue. I do not think it would be a good idea to have a flu vaccination and a Covid vaccination at the same time. I shall certainly not be doing that.
It is true that the forum has become very quiet. When I started this thread back in 2010, five years after I had finished treatment, it was very busy. At first it was mainly Brits, then American women joined in and it went from there. As you say, Facebook has a lot to do with it, but who is checking the information? Even if patients do not get much information from hospital staff, they can get it elsewhere. I found my medical team only too happy to answer all my questions, back in 2005, but they did say that it was unusual for them to be asked so many questions. My oncologist did not hide from how toxic the chemotherapy was going to be.
Let us hope the forum will come back to life.
Take care of yourself and look after Michael.
Love.
Sylvia xxxx
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Hello Sarah (Loveandlight),
I was so thrilled to find your PM this morning and I decided to share it with others on the thread, who will remember you and how you were posting on behalf of your mum. It was so nice to know that you thought of us when you were walking past the building where your mum had her treatment.
I do hope you and your mum are keeping well and safe.
We are always happy on the thread when posters pop back in.
Sending you love and best wishes.
Sylvia xxxx
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Hello to our Australian contingent. Hello Kath and Helenlouise. I have just been listening to all the news about the devastation Covid is causing in India and it made me think of the two of you and I was wondering what is going on in your neck of the woods. We already have cases of the Indian variant in this country, so I do wonder where we are going. Tomorrow Raymond and I will be getting our second dose of the AstraZeneca vaccine and we are not looking forward to it.
We are getting very abnormally dry weather and Raymond is suffering badly from allergies. It seeks to be very bad in Exmouth.
I do hope there will be more concentration on breast cancer as we get towards the end of lock-down, but I do wonder whether unlock-down is going to happen.
I carry on as normally as I can. I find that the neuropathy in my feet from docetaxel is what bothers me the most from my cancer journey, even all this time after the event. The slight lymphoedema in my right arm does not bother me that much, even when I have done a lot of gardening. Using the mouse for too long does tend to make it a bit heavy.
Keep well, keep safe.
Love and best wishes.
Sylvia xxxx
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hello Sylvia and all those on the thread,
I am off for a colonoscopy this morning. The prep has been pretty awful but looking forward to knowing if there is an issue in my bowel. CT showed thickening. Also having bone scan in a week or so, MO following up muscle issues on chest wall. He has mentioned osteonecrosis (from the radiation). The journey goes on....
we still have little to no COVID action and I have not heard of the Indian variant in Australia. My husband and I are scheduled for astra vaccination soon. As doctor advised get it ASAP. If there were to be an outbreak here it would spread like wildfire because social distancing in many places is a thing of the past. If and when we do get an outbreak getting the vaccine will be difficult. We both had our flu shots so have to wait the two weeks.
I am pleased to here things are somewhat better in the UK. It has been a long and difficult road for you. I really don’t think COVID will be resolved for very long time if at all.
It is a beautiful time of year here. We are planned to go camping with our son tomorrow for two nights. My last camp before it gets too cold. Hopefully the weather will hold.
Must get moving for my appointment. Will send more news soon.
I do hope you are all going well.
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Hello Sylvia and all,
Just popping in to say that I am doing well - 4 months have past since my surgery - so a couple more and I should be fine. I have started driving again and all household activities are no problem - my only issue is with gardening - it is still uncomfortable and hurts when I bend over - so I cannot pull weeds - but I can prune the shrubs. I actually had an in person visit with my cardiologist March 31st and she is satisfied with my progress. Most days I can forget that I ever had the heart surgery - and breast cancer rarely enters my sphere of thought.
Covid in Canada is rampant - our vaccine rollout has been abysmally slow. Most people are looking to the vaccine as a glimmer of hope for a soon to be better future - but, I think that will not happen any time soon. We (my husband and I) limit our outings and keep to ourselves - we walk a lot in areas that are fairly isolated and not many people around. We are getting weary like everyone else. However, we are blessed in that 2 of our kids live fairly close to us and have always been in our bubble so we occasionally get to see them at outdoor venues along with our 2 grandchildren - our son has a baby boy 6 months old and our daughter has a 4 year old girl - and our daughter is having a baby in August (sibling for the 4 year old) - so our little circle is growing in spite of covid. At least this is a little bit of "normal" and joy for us.
Sylvia - glad that you and Raymond are continuing to walk each day - you certainly sound very busy.
Gill - so sorry to hear about Michaels heart attack - keep us posted as to what tests he is going to have done. Maybe a cardiac catheterization?
Mary - I get very dry skin in the winter months but so far the skin is not thin. I wonder how your puppy is doing?
Kath - you sound so very busy with all of the vaccines in Australia - a challenging time for you in your line of work.
Helenlouise - hope your colonoscopy goes well and that you have a good time camping with your son.
Stay safe everyone and be well. These are very tough times we are living in and I personally find it discouraging and depressing. Longing for better days to come to every country around the world.
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woohoo! Clear in the colon! Have had a lovely dinner and looking forward to camping!
Good to hear you are recovering steadily adagio. Sorry Gill I missed your news on your husbands heart attack! Hope recovery for him is speedy and full. We have many friends who have had heart issues.
Take care all. Xx
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Hello adagio and Helenlouise,
Thank you for your posts. I am glad you are both getting good news. I am just getting ready to leave for the Covid vaccination dose 2, so I shall write more fully when I get back.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I saw this morning that the Moderators had created a new thread with reference to TNBC, different subtypes and research results. I need to read it again more carefully, but I would welcome your comments. Let us discuss this some time. Perhaps we shall hear from people who have had these subtypes. When I was diagnosed all the oncologist mentioned was that a lot of triple negative breast cancer were basal-like but not all. Is there a difference between a subtype and different breast cancer tumour status? I was invasive ductal carcinoma with triple negative receptors. I was never told whether mine was basal-like and way back then I was told I had a complete pathological response. I was never given a written pathologic report.
Talk soon.
Love and best wishes.
Sylvia xxxx
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Hello Helenlouise,
I was glad to read that all went well with your colonoscopy.
What kind of bone scan are you going to have in the next week or so? By the sound of it I think you may be having a bone nuclide scan, but I am not sure because this kind of scan subjects you to a lot of radiation and I would not think you would want it. I had a bone nuclide scan after diagnosis and before starting treatment, because the oncologist wanted to make sure that there had been no spread to the bone. I was told that this scan would make me radioactive for a few days and that I should avoid people, especially children. If there is a possibility of osteonecrosis from the radiation I would not have thought that more would be prudent. I had another bone nuclide scan after I had finished treatment. Everything was clear.
The other scan I had a couple of times was a DEXA scan which is much more simple and really looks at the bones to see if there are signs of osteopenia or osteoporosis. I was diagnosed with this and I think it was due to treatment and the parathyroid problem. I have not had follow-up DEXA scans but have treated the osteoporosis by getting plenty of calcium in my diet, along with vitamin D. During and since treatment I have refused all offers of bisphosphonates because I think they cause problems.
You must be a very strong person with all that you have been through.
I do hope you and your husband will get your AstraZeneca vaccination soon. Raymond and I had our second dose yesterday. Today we are feeling fine but a bit tired. The powers that be are now talking of a booster one in September and are saying it will be the Pfizer vaccine. I have doubts about that because I have read from a reliable source that you should not mix and match vaccines. The powers that be are also talking early about flu vaccinations. I think two vaccines at near dates would not be good for the body.
I think that the future for Covid will be the introduction of annual vaccinations.
I hope you have a good time camping.
Keep well, keep safe.
Love and best wishes.
Sylvia xxxx
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Hello adagio,
Thank you for popping in. I was glad to know that all is going well since your surgery.
I can understand about having issues with gardening, so give yourself more time. Raymond still has issues with bending and of course this is because of the breast bone having to be severed to carry out the surgery. Apparently the breast bone is put back together with stainless steel wire. It sounds awful. The worst issue he has is with the long incision from ankle to below the knee to remove the great saphenous vein for the bypass. The right leg is puffy at the ankle and foot and feels heavy. I think it is lymphoedema and the podiatrist thinks so too. He is wearing compression socks.
You were lucky to get to see your cardiologist in person.
It is good that you are able most days to forget that you ever had heart surgery and it is really good that you rarely think about breast cancer.
As for Covid, I do not know where we are going. Like you and your husband, Raymond and I keep ourselves very much to ourselves. We try to walk but often the weather has been too awful to do this.
I was glad to read that you have been able to get together with your family.
We do lead a very busy life but we do like to help people. I am back gardening and enjoy it. I am still keeping a vigilant eye on my cousin and am still running our apartment complex.
I do hope you will be able to keep in touch with us when you feel up to it.
Keep well, keep safe.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I hope all is well and that Michael is not having any further problems. Is he still waiting to be seen?
What a mess this country is in and now we have cash for curtains! I think Prime Ministers should take the Downing Street flat as it is. It is really a furnished office. If John Lewis furniture was good enough for Theresa May, it should be good enough for Boris. I remember Cameron and his wife also spent lots of money doing up the Downing Street flat. These people have no idea how hard life is for many. Boris has still not given a proper increase to the nurses. It is shameful.
I do think we need somebody more lively as leader of the Labour party. I think Angela Rayner or Jess Phillips would give Boris a good run for his money!!
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I've read through the information on the new triple negative subtypes thread. I think that any information that adds to patients' knowledge and encourages them to research their cancer is a move in the right direction. Knowledge really is power. I would caution anyone about accepting statistics at face value. Much of the scientific research on metaplastic breast cancer, for example, is flawed simply because metaplastic cancer is so rare and in order to put together a reasonably sized cohort, patients at different stages of their disease or different ethnicities (for example) are put together. So beware statistics, averages and generalisations.
The moderators are right to make it clear that ' triple negative ' has become a bit of an umbrella term that lumps all breast cancers without receptors together, when there are huge differences between subtypes and consequently treatment and prognosis.
As you know, I'm very much in favour of women asking for a copy of their pathology report. They don't need to understand everything on it, but the report will mention subtype. I was under the impression that I had straightforward (!!!) triple negative until I saw the word 'metaplastic'.
Sorry my comment is a bit rushed. Too much to do as usual.
Keep safe and well.
Much love,
Gill xxx
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Hello adagio,
What a difference a few months makes! Thank heavens your surgery has been so successful. Even so, the aftercare was poor to say the least. Canadian health care seems to have gone the same way as ours, Covid isn't an excuse but has been useful to politicians everywhere.
We don't know any details about Michael's heart as the promised tests haven't yet been undertaken. He's on the waiting list and he spent yesterday trying to find out exactly where on the list, but as has become the norm, no one is answering the phone. The GP isn't having much luck either.
Keep well adagio and enjoy your grandchildren.
Love,
Gill xxx
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Hello Helenlouise,
Congratulations on your colonoscopy results. You can enjoy your camping trip without the possibility of colon cancer to worry about. The last time I went camping I was 19 and on a training course for Cub Scouts leaders. Plenty of jolly hockey stick types, not a bottle of wine in sight, no showers and stomach upsets all round!
Thank you for your kind words about Michael. We only know there's been some damage to his heart and the junior doctor in A&E thought it was a heart attack but the promised echocardiogram and 24 hour heart monitor haven't yet materialised. Waiting lists are very long here.
Take good care of yourself.
Love,
Gill xxx
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Hello Sylvia,
I hope the side effects from the jab have been minimal for you both. It looks fairly certain that we'll be having a booster in the Autumn.
I can't help wondering if Jags and her family are safe, the dreadful Covid situation in India seems to be getting worse day by day. I read this morning that the figures originally given are probably three times higher. I cannot understand why the Government here didn't close down flights from India as soon as the situation became clear. This is a whole world problem and it's to be hoped that all Governments send spare vaccines and help with oxygen supplies.
Wishing you both a peaceful weekend.
Love,
Gill xxx
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Hello Gill,
I do agree that knowledge is power but I also think that you have to understand information in order for it to become knowledge. I think that information can easily be misinterpreted and misunderstood. I also think that you have to be careful not to frighten or discourage patients.
I do agree that you have to be wary of statistics. They can prove anything and can easily be manipulated. For example, I think the number of deaths from Covid-19 in the UK is higher than 127,000+. Although there are fewer deaths we seem to have been stuck at that number for a mighty long time, and in the past, I seem to remember a few thousand were just deducted.
Whatever the breast cancer the basic standard treatment is still surgery, chemotherapy and radiotherapy, with various medications for hormonal positive, and Herceptin for HER2+.
I have just read on the newsletter from the New Scientist that "A new kind of engineered immune cell offers hope for treating cancer, after promising results in mice". I do not have any more details at the moment. I need to click on the link and have a read.
I did look back at the Moderators new thread and saw that Santabarbarian had posted a comment which I found very interesting, and she also posted a link that I must look at. There is so much information now that it is difficult to absorb it all. From my own conversations with the oncologist and breast cancer consultant I remember more than any other details those about most but not all triple negative breast cancers are basal-like, that my triple negative tumour status did not necessarily start as such because cells were continually mutating, and something to do with a p53 cell being silenced through a process of methylation. I found some of that a bit difficult to understand at the time. I was never offered a pathology report and was just glad to hear that I had had a complete pathological response. That was good considering I was told, in the beginning, that the prognosis was poor because it was not hormonal and they could not give me tamoxifen. Nearly sixteen years on I am here to tell the tale! Throughout my treatment I did what I thought would be good for me.
That is all for now. We obviously have too much to do. I am trying to rest a bit during this long weekend as Raymond and I had our second dose of AstraZeneca on Wednesday.
Love and best wishes.
Sylvia xxxx
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hi all, home from a fun couple of days in the bush. Days were warm and nights quite cold. Lovely to sit around the fire with a glass of wine. Bit sad to come home knowing my next camping trip will be the other side of winter.
The scan I am having uses radiotracer / isotope which they inject then 3hours later they do the scan. I haven’t heard the term dexa but will ask. Yes lots of radiation. My list of procedures is frightening! I think I’ve only had one like this before, would need to check my list to be sure. I am happy to do it and get a better idea if there is anything going on with my ribs. Hopefully it’s just muscular. It seems there is always something to be followed up on..
we have had our flu vax. Had to wait two weeks before we could get the astra vax. Fingers crossed winter does not bring another wave.
Glad to hear news from you all. Xx
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Hello Gill,
Thank you for your latest post. As for the side effects of the vaccination, so far so good, just a bit of tiredness and feeling a bit vague.
Like you, I have been wondering what has happened to Jags56. It is not like her, not to have popped in. As you say, the Covid situation in India is getting worse and worse. Again, I was reading about it and it is amazing to think that in the beginning all was going well. They did the herd idea and Modi declared at one point that they had beaten the coronavirus. It looks as though they had not counted on the variants and vaccination availability was poor. There was also mention of double variants. I think it is about time these viruses were stopped being given the name of a country and that they were given their allocated numbers when given to us.
That is about all for now. Have a good weekend and do not overdo things. Keep us informed about Michael.
Keep well. Keep safe and take care.
Love.
Sylvia xxxx
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Hello Sylvia,
I think we'll have to agree to differ in relation to patients asking for their pathology report. In so many English cancer departments, breast surgeons simply don't have time to explain or answer patients' questions any more. Times have changed - and not for the better. You were very fortunate to have a surgeon and oncologist who listened and gave you time. Patients who seek a second opinion will be asked to provide their pathology report. Asking for reports to be forwarded electronically simply won't happen in most NHS hospitals. Telephones are never answered, emails ignored and patient notes disappear. My advice would be for patients to ask for as much of their data as is possible. Of course, things have become much worse since the pandemic as I'm just discovering with Michael's heart problem. His GP has referred him and he has to apply for an appointment at any one of six cardio clinics. There are no appointments at any of the clinics and it seems unlikely that there ever will be. No one is answering the phone. The unspoken plan seems to be to wait until a patient has a massive cardiac event before admitting them for emergency treatment. This is not the fault of our medical teams who do their very best to save lives before an emergency situation arises. It is the fault of a Government determined to destroy our NHS before selling it off.
Michael has his Pfizer vaccination on Thursday and I'm hoping the side effects will be as mild as last time. I do hope that you and Raymond have recovered from the tiredness and slight brain fog, I had nothing but a stiff arm. I think all of us take a leap of faith with the vaccines. They're remarkably effective in the short term, but only time will tell what longer term issues might arise - if any at all.
I no longer have access to the New Scientist, but I'm going to look up the engineered immune cell treatment for cancer. If successful on mice it shouldn't be too long for human trials to begin. I think most of us here would be grateful to see any glimmer of hope for future cancer treatments that didn't involve chemotherapy. Very few of us ever recover fully from the effects of chemotherapy. I still have tiredness, leg pain at night and patchy hair. My memory is slowly recovering.
Very windy weather here, but at least the rain has arrived at last. According to the Met Office next week will be much more settled and much more like May. There are pictures in the newspapers of people sitting outside pubs eating and drinking in the pouring rain!
Take good care of yourself and Raymond.
Love,
Gill xxx
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Hello Gill,
Thank you for your post. I do realise that everything within the NHS leaves much to be desired these days and that patients have to fight their corner. Patients are simply numbers to be tossed around. I have various friends and acquaintances here and they all tell me tales of horror. I know how hard I had to fight for Raymond and still have to fight. For two days Raymond and I took turns to phone our surgery and could not even get through to the main answering menu. Which just kept getting the busy tone with an invitation to use ring back, for which there is a charge. In the end Raymond went on the website to the surgery, a maze in itself and found an email address. Much later the phone rang and I answered. Some pushy woman asking to talk to Raymond. She had misread the email. I could see Raymond was stressed so I got on the phone and gave her a piece of my mind. We could do without this stress, but it seems part and parcel of the NHS these days. A patient receives impersonal, bullying letters with no signature.
I was so sorry to read about the problems you are discovering with regard to Michael's heart problem. I know how upsetting this must be. Perhaps you should contact PALS. It is unbelievable that Michael has to apply for an appointment at one of six cardiology clinics. This seems to be happening here as well with patients being sent to other hospitals etc. when they are patients at the RD&E. There is no consideration for how patients are supposed to get to these other places or for how they may feel about going to a strange hospital. It is absurd that Michael has been referred to six cardiology clinics where there are no appointments. This is the world of the absurd and Covid -19 is the excuse for everything. The situation was dire long before this.
I think you are right about waiting until a patient has a massive cardiac event before admitting them for emergency treatment. This happened to one of the men with whom Raymond became friendly in the cardiac ward of the RD&E. He was in there for about four weeks waiting for emergency valvular and artery problems before being sent home and nothing done. Sometime later he collapsed at home, his son gave him mouth to mouth resuscitation and the friend was admitted to hospital. He is now recovering.
You are right about the determination of the government to destroy the NHS before selling it off.
I do hope Michael will not have any side effects from the Pfizer vaccination on Thursday. Raymond and I are alright now but we had a few days when we were really under the weather.
How are you keeping? All this must be a terrible strain.
I would not like to guess how long it will take to get away from chemotherapy, or indeed radiotherapy, in the treatment of cancer. It is true that both cause long-term side effects in the patient. I would say my neuropathy in the feet has got worse over the years and I have no idea what would be found wrong with my body if I had a full health check!
I do wonder where we are going now with Covid-19. I would never be surprised that there is another surge. The WHO definitely think so.
I wonder what the various elections will bring tomorrow?
That is about all for now. Keep safe and well and keep us up-to-date on what happens with Michael.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
This might interest you, it's a very new article concerning the pros and cons of cancer patients taking bisphosphonates. Google 'Fred Hutch Risks vs Benefit : Bisphosphonates in Breast Cancer'. Although I've had no problems, once an issue does arise there doesn't seem to be a way of putting it right again. There are compelling reasons for breast cancer patients to take biphosphonates and major problems are rare, but having suffered 'rare' problems with chemotherapy I'm cautious. I have a Zoledronic acid infusion in June, I'm hoping this will be the last.
Michael is no further forward in trying to organise his consultation or cardio tests. A friend emailed yesterday to say that her usual appointment with her cardio consultant, (she has atrial fibrillation), had failed to materialise and like Michael, she was unable to book an appointment as none were available. Not wanting to leave her health to chance, she paid for a private appointment with her usual NHS consultant and he told her that due to Government cuts, he was only seeing a fraction of the patients he saw before. There are some very angry doctors as well as patients it seems. Tomorrow we shall see another big win for Johnson, loveable rogue that he is. It's in our age group that he has his largest following apparently. These are the very people who need the NHS most!!!
Weather much better today, still breezy but dry.
I'm off to do some gardening now, stay safe and well.
Love,
Gill xxx
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Hello Gill,
Thank you for the information about the pros and cons of cancer patients taking bisphosphonates. I shall read it as soon as I can.
I was sorry to read that Michael is no further forward in trying to organise his consultation of cardiology tests. I keep hearing about how patients cannot make any headway with the NHS. As we all know, Covid-19 will be the excuse for years to come, but we know the NHS was in dire straits before it all started. The headline on yesterday's Guardian was that experts were saying £102 billion is needed to rebuild the NHS. I do not think this is going to happen. As I keep saying, this country, especially England, is overpopulated and too many people do not look after their health and the system was bound to collapse. The UK is totally unbalanced with reference to population and we could do with thinning out the population in England and relocating people to Scotland and Wales!
I am not surprised there are angry doctors as well as angry patients. The NHS is too impersonal and we are just numbers. I am sure there is a lot of waste going on as well. Repeat prescriptions are a problem because people just keep refilling them even if they are not taking their medication. The NHS was doomed when people kept being told it was 'free'. It is not free, it is free at the point of use. In fact, it is very expensive.
I think the only way to go now is to go privately if you can afford it.
I find it very depressing listening to the results of the various elections. There is something wrong with a country that can vote for Boris Johnson and his party. I watched him and his 'partner' arriving to vote and I did not feel any pride in knowing he was my Prime Minister. I think they are playing at being celebrities and there is no dignity in them. I think Labour has paid the price for sitting on the fence about Brexit. Johnson is getting votes because he got Brexit done, even though it turns out to be a disaster. I do not know how Labour will recover. We are such a mixed country now that there is no cohesion. I think ordinary people are voting against their own interests and they do not realise this. We have a Tory fiefdom.
I cannot see anyone that would make a good leader for the Labour Party. It looks as though a big chunk of the population want a performer and not a serious thinker.
It is a very wet day here and it looks as though we are now going to get all the rain we should have had in April.
That is about all for today. Once again, the forum, at least the triple negative part, is too quiet.
Keep in touch and look after yourself.
Love.
Sylvia xxxx
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Hi Sylvia, Gill, Adagio, Helen and all here
I am trying to catch up with posts after being away from here for 2 weeks, wanted you all to know I am thinking of you and will post soon, Mary
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Hello Mary,
I was glad to see your post.
I do hope you had an enjoyable time during your two weeks away from home.
There has not been much happening on this thread, nor on the Triple Negative threads in general.
Life is much the same here in the UK. Covid still dominates the news but the last few days have been all about the local elections. None of it has been very exciting. Raymond and I did not vote. In East Devon there was no one running who represented our views or, indeed, mentioned the issues that we feel are the most important.
I look forward to hearing from you.
Love.
Sylvia xxxx
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Hello Gill,
I just wanted to let you know that I did read the information about bisphosphonates and I found it very interesting.
I think patients need to have a good think about it and then make their own choice.
I made my mind up long ago and will never take them.
Hope you are having a peaceful weekend. I must go now as Mr Tesco is on his way!
Love.
Sylvia xxxx
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Hello Sylvia,
It was depressing that so many people voted for more of the same. Still old Boris is a good laugh, bit of a showman, someone you could have a pint with down at the local.......Those of us who have struggled to get hospital treatment or even a diagnosis might think otherwise. I'm afraid that too many in England have adopted the same, I'm alright Jack' attitude as the PM and his Cabinet. If I had your language skills I'd be leaving the country.
The Queen Elizabeth Hospital in King's Lynn is collapsing. The roof has been declared unsafe and the parts of the roof that have been assessed (there are large areas of the roof that remain unassessed) are being held up by over 90 steel posts. There are literally steel floor to roof posts all over the wards and around patients' beds. Medical staff fully expect the roof to fall in at any time. Staff are afraid for both themselves and their patients. Managers are desperately appealing for Government help. The Queen Elizabeth is not on the Government's list of hospitals to be improved/rebuilt though this will happen sometime in the mid to late 2020s. One of the clinical team described the situation as another Grenfell Tower disaster waiting to happen. The contempt for human life is beyond belief.
So many people are losing their lives to serious health conditions other than Covid. Cancer and heart issues are a time bomb. Are some patients to be written off as too far advanced and now unlikely to survive long term, in order to try and save those who are more recently diagnosed? What an appalling dilemma our doctors face. This is not a decision I'd care to take.
Warm weather yesterday and I spent the day gardening. I find planting and digging therapeutic and stayed out during a passing shower. Michael (not a keen gardener) retreated to the house. Some of my plants had suffered frost damage but a couple of weeks in the conservatory has saved them. As far as vegetables are concerned I've only planted potatoes and runner beans. All other vegetables fall victim to the rabbits and deer.
I wonder what's happening with cocolala? She must be on the taxol part of her chemotherapy by now.
Wishing you and Raymond an enjoyable week.
Love,
Gill xxx
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