Calling all triple negative breast cancer patients in the UK
Comments
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Hi, Susie
I complain about the early dark too, the days are so short now. For us November is usually a dark, dampish month. Sunshine is promised for tomorrow, that will be good.
I hope the sores on your breast area clear up soon, and wish you good luck with Zometa when you start it. Sorry if I missed something, have you had the Bone Density test to check your bones?
Talk soon, love, Mary
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Hi Mary,
Metaplastic cancer is most commonly triple negative, but, as you say, not always. I'm very glad that mine is TN, as once I'm four or five years out, unlike other cancers, I won't need to worry about taking hormone suppressants for years after.
I now realise that chemotherapy kills off spots. Can't explain why my pores have closed up though.I now have the skin I've always wanted - bit late in the day perhaps.
Falling leaves are a complete nuisance. One of my cats has a long shaggy coat and walks through the house leaving a trail of disintegrating leaves behind her. Her sister, petite and well groomed with a short sleek coat looks on with complete distaste. Like you, I'll have to get out there and remove those great piles of leaves that blow in and then stay in the more awkward corners of the garden.
Not sleeping properly is miserable. I had a phase of insomnia a few years ago and just dreaded going to bed in the end. Like Sylvia, I hadn't realised that you worked, so you really need a few hours of deep sleep. Hoping last night was a one off for you. Some people in the UK also find that the clocks going back or forward in the Spring really disrupts their life for a while.
I'm trying to keep up to date with triple negative cancer research too.I'm very hopeful that the dreaded chemotherapy will soon be a thing of the past. As far as metaplastic is concerned, the accuracy of research data is questionable. Because it's so rare, few women are available to form the basis for a reliable study. Different age groups, different stages and grades and subtypes are all lumped together in far too many studies. This has resulted in all metaplastic cancers being categorised as very aggressive with a poor prognosis.This is plain wrong, which may well be the reason behind most Oncologists just ploughing ahead and treating Metaplastic as a slightly more difficult triple negative.
Good luck with the leaves.
Love,
Gill X
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Hello, Mary,
No, I haven't had my bone density checked. I don't think it matters as the drug is not intended in this instance to strengthen weak bones. I think mine are pretty strong, anyway, or so I was told by the orthopaedic surgeon who replaced my knee two years ago.
Gil,,
I had some warts on my back which have shrunk noticeably after chemotherapy. Every cloud etc. MY facial skin feels lovely and soft but that's because of the complete lack of facial hair over the past six months. I shall not be growing a moustache for Movember.
Susie
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Hi Susie,
A complete lack of facial hair, music to my ears. I must say that when my Oncology nurse told me that my nose hairs would drop out I (inwardly) let out a huge cheer. Yes, I know that they help filter the air to keep it relatively germ free and that I'm being very frivolous, but facial hair I absolutely will not miss.
Gill X
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Gill,
The leaf situation will be ongoing for months, I live right next to a large tract of woods, mostly oak trees. They drop their leaves for what seems like forever. How nice you have cats! I have also had cats and/or dogs almost constantly, not right now. My last 2 cats passed on a couple of years ago, one was 19 and one was 21.
That's something I've never heard before, that chemo makes your skin pretty! Interesting, maybe your skin is pretty to start with.
I do not work, don't have a job. My sis-in-laws and I are part-owners of a company but we pay people to run it, and we have children and step-children who work there. I can get up when I want, unfortunately I am an early riser, no matter what time I go to bed. Right now it is after 6 AM and the sky is just beginning to lighten in the East.
I had no idea before my cancer diagnosis that there were so many different types, subtypes, genetic influences, gene disturbances, all within this BC world. I guess I can understand why there is slow going in research. And, as you said, the more rare your type of BC, the less it is concentrated on. I know the docs think they have a handle on hormone positive BC and even on the HER2 positive type, (not a cure, but a handle), and now are putting a lot of effort into something more to battle TNBC. They now seem to think Immunotherapy holds a lot of promise, it would be awesome if they could figure out how to make it work without adding the old toxic drugs. From what I have read, the new drugs also have toxicity. We just have to be tougher than they are!
Talk to you soon, love,Mary
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Susie,
If your bones are good now, they should be extra-hard after a course of this drug. My gynecologist asks for a bone density test every year or two, but after the last one I don't have another for 5 years.
I have noticed a curving inward of my shoulders, but I think that is because of the mastectomy and the muscle disturbance caused by the surgery. I try to make an effort to straighten shoulders when I think about it.
Have you had the flu at all since you have been getting the regular flu shots?
Later, love, Mary
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Hello Mary,
Thank you for your latest post. I can understand how your business can keep you busy.
I am not sure where the future lies for the NHS. What is happening to it is such a pity. I think everything has got out of control and that being part of the EU has not helped. Free movement of people lacks practical common sense. We are told that the NHS would be doomed without immigration, but I just wonder why we have not been training our own people. On the news this morning I heard that we are 51,000 nurses short. It is probably something the same with doctors and teachers etc. I do not think it is right that we are poaching the professional people from other countries. They are needed there and have paid for them to be trained. I think the establishment here has never rid itself of its Imperial and Colonial mentality. We have also bombed other countries to bits and now we have the world on a continual march to the Western countries, looking for El Dorado. I do not know where it will all end.
As for Flora's mum being told that she has to pay for her treatment, I am sure that is not allowed under the NHS. You would pay for your treatment if you were having it as a private patient or your private insurance such as BUPA would pay.
I do understand what you mean about repurposed drugs. I think Big Pharma will try anything. We have to remember that Chris Woollams is also selling all kinds of vitamins etc., books and giving personal prescriptions. I find a lot of what he has to say very interesting but I have not bought any products and the only book I have bought was years ago and I think it was about the Rainbow Diet. I do think he has always been way ahead of orthodox medicine and I do like to read the magazine, icon. It was that magazine and the book newly published in 2005 by Dr Rosy Daniels, The Cancer Directory, that guided me when first diagnosed and I have really kept on that same road. From the book I got all the information I needed and I felt empowered.
Throughout the past 13 and a bit years since diagnosis, I have done what I thought best for me.
The three books I mentioned by Yuval Noah Harari and are not really that heavy but they do make you stop and think. With the last book, 21 Lessons for the 21st Century, I have not really got that far. I have not been in a great reading mood. What are you reading at the moment?
It is true that we seem to get a bit shaken up with all the darkness when the clocks go back. It is really an artificial thing to do. November has been very wet and dull here but that is the way it is.
Thank goodness Halloween is behind us. Here it is followed by Guy Fawkes night (November 5th) with lots of fireworks going off. Why we are still remembering Guy Fawkes is beyond me. I do not know if it is done now, but as a child there were bonfires all over the place and Guy Fawkes was burnt in effigy. Weeks before these effigies would be put on the pavements by children, who would then proceed to say "Penny for the Guy". I think today the trend is towards communal fireworks displays. It would be good in this country if we could live in the present instead of living in the past. Political correctness has also gone completely berserk.
The news here is all about Donald Trump and a lot of it is biased. At least it makes a change from Theresa May and whether we are going to get Brexit at all.
I do miss all the people that have formed such a friendly group here. We had discussed so much and knew a lot about one another and not just as cancer patients and survivors.
That is about all for today.
Keep well, take care and do not drive yourself too hard.
Love.
Sylvia xxxx
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Hello Mary,
No, I haven't had flu since starting an annual vaccination. Nor have I had any adverse reactions to the vaccine.
Susie
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Hello Mary,
I just wanted to tell you that I have just been reading the latest edition of the magazine What Doctors Don't Tell You and saw that the title on the cover was Reversing Tooth Decay~The end of drilling and root canals. Inside on page3 there is the first article entitled The Dental Revolution. The feature article inside is Dentristy's Secret Weapon. It is all about treatment with ozone. This was all new to me, but it may be current in the US.
I would love to discuss this with you.
Love,
Sylvia ww.
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Hello Mary, again,
I forgot to say that I remember the lively discussions we had about that book, the Dental Diet, and how the author reckoned that a lot of our ill health and chronic diseases started in the mouth with our teeth and gums and how we had a gut in our mouth, like we have in our body. I do believe in all that and how it is all to do with the wrong bacteria in our gut and mouth and how we have to get that all in order and how fermented foods help. Are you still having fermented foods like sauerkraut and are you still taking probiotic supplements?
I have also been doing some more reading in that recent book, the Complete Guide to Breast Cancer, - how to feel empowered and take control, by two doctors who have been through breast cancer. I have been looking agin at the titles of the 24 chapters and how they cover most things. I do think this book is much better than searching the internet.
It has been another wet day and there is a rain warning for Wednesday and Friday. Where was this rain when we needed it?
By the way, thank you very much for your photograph of the pear tree. We have not posted many photographs lately.
That is about al for now.
Love.
Sylvia xxxx
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Hi Mary,
That's a very good age for cats, mine never make it past 14. My two girls were born to the same feral mother though each has a different father, so one is huge, long-haired and permanently cross, while the other is tiny, sleek, elegant and very shy. I'd love another dog, but the husband isn't keen.
Our leaf problem usually ends at the end of November when the wind gets up and blows them off in one go. I envy you all those healthy Oaks. The UK has endured a great many tree diseases over decades and many English Oaks are no longer healthy, our Horse Chestnuts have a parasite that causes the leaves to turn brown and curl up and our magnificent Ash trees have a disease called Ash die back. We've had to fell most of the Ash trees in our village and on our own land. We've kept the two eldest trees in the hope that they might recover at some point.
Our heating system runs on Ash and Oak wood so it's a worry. All other woods burn too quickly and brightly and leave too much ash behind.
My skin has always been very oily, hence the spots and open pores. I guess chemotherapy has dried it out a little. This is one side effect I'd like to keep.
I do think there's more research into triple negative BC recently. It's considered rare, but to me 10% - 15% is an awful lot of women. So many breast cancer types and then subtypes within them. I can't help thinking that we'd all be so much better off without breasts at all! There's definitely a design error there.
By the way, you should be pleased to be an early riser Mary. Latest research shows that women who get up early are less likely to have breast cancer!
Take care,
Gill X
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Hello Sylvia,
I agree with you, our NHS has lost its way. Deliberately underfunded, forced into debt and all ready for privatisation in order that the fat cats can make ever more fabulous amounts of money on the backs of the sick and vulnerable. The Archbishop of Canterbury made an historic visit to our Roman Catholic Cathedral in Norwich today and talked about our responsibility to protect the poor, the disenfranchised, the sick etc. It's an idea that central to many peoples' lives and most of us do our best. It leaves me wondering if the UK is now run by a bunch of psychopaths who are incapable of thinking beyond their own self interests and their personal wealth.
Interesting thoughts regarding oral health and it's relationship with our general health. Many dentists warn about the dangers of neglecting teeth and gums and make connections between neglected oral hygiene and heart disease for example. So why isn't the nation's dental health subsidised at a more realistic level?
Interesting that you feel the UK has never fully shaken off its Colonial past. This is what I feel whenever we invade a foreign country and make the lives of the indigenous population a whole lot worse. Iraq is the most obvious, but there are many other examples. Money for weapons, but no money to help the NHS, the underprivileged, the mentality ill and so on.
This is turning into a very dark post! So on a brighter note, I'm now going to do something fun and frivolous - pluck unruly eyebrows while I still have some, file and shape nails and learn how to tie headscarves more artfully, as at the moment I look a bit like Andy Capp's wife ( Flo?). I don't watch television, but there's often a good drama to be found on Radio 4 Extra, so that's also on my to do list.
Take care,
Love,
Gill X
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I have often wondered about teeth/gum health which is also supposed to be implicated in heart disease. Maybe they have found a cause/effect that I don't know about but isn't it more likely that people who neglect their teeth also neglect other areas of health care?
Any thoughts?
Susie
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Hi Susie,
I think one of the issues here is probably poverty. People coping on a low wage or benefits may neglect their teeth because caring for them is just too expensive. Dentists, hygienists, and also products like floss or interdentals are beyond their reach. Poverty causes depression which leads people to spend the little spare cash they have on the quick fix eg fast high fat or high suger food, alcohol or smoking. These all cause heart disease. The problem with research in recent history seems to be that too few people are followed over too short a time.
As I understand it, the plaque which builds up on neglected teeth is capable of causing an infection which affects the heart if it breaks off and is swallowed.
Have you been to see the lights around the Tower of London in honour of those who fell in WW1? I wanted to go, but the husband thinks that public transport is out of bounds for me whilst undergoing chemotherapy. Not sure he's right as those living in London whilst having treatment have little choice but to use public transport.
Apparently Church bells will be rung all over Norwich on Sunday to mark the Centenary. However, as we have to lay the wreath at the village Cenotaph and then spend the afternnon delivering Parish Council notices around the vlllage I'll miss anything happening in the city. What is it about being over sixty that means you no longer have any time for yourself?
I might use the vacuum cleaner on my head tomorrow. A friend who underwent chemotherapy a couple of years ago tells me it's much safer than shaving the hair off which risks cutting yourself.
Hope the radiotherapy sores are now healing.
Gill X
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Hi Gill,
There's much sense in what you say about teeth/gum health. Mind you, when I was last looking for a new dentist, I just assumed that I would have to go private but found that the nearest one to me would take me as an NHS patient. I guess that, once again, London has capacity that other places lack. Still, anything other than a basic check-up is as expensive as private. I paid £55 to see the hygienist recently as I'd been told to get my teeth in the best possible state ahead of Zometa.
I was advised to avoid public transport during the rush hour during chemo, which I try to do anyway on the grounds of comfort. But I was having the injections to maintain my immune system as a matter of course and had no problems with infection. Bit of a waste of those one-use face masks I bought in bulk from Amazon! I haven't been to the Tower, though. I'm sure it looks great.
Saw the radiotherapy nurse this morning and she says it's improving. We've left it that I'll ring for another appointment if I'm not satisfied with my progress next week, but she said that 7-10 days should see them cleared up.
I shall be in Norfolk over Christmas, by the way, based in Cromer with the in-laws. I want to visit Norwich Cathedral. Have been there before but it was about 30 years ago.
Susie X
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I was walking along the front at Cromer only yesterday, spent a good hour on the pier watching the waves crashing in. Visit Cromer much more often than Southwold nowdays, though Southwold is nearer.
The Anglican Cathedral in Norwich is well worth seeing. It's survived the Reformation, Cromwell and the last war. I go to the Catholic Cathedral which has much less history and bling, but is very peaceful. My husband and I are the Catholic Diocese of East Anglia's Archivists. So have a good knowledge of one Cathedral, but only know the basics of the other.
I was lucky enough to take out private insurance with my dentist about 25 years ago. Although I can't believe it's cost effective for him and though he no longer runs his insurance scheme, he has kept his old customers on. I should arrange an appointment before Zometa treatment then. My dentist is up to speed on the impact of different meds on teeth and gums and is usually a reliable source of information so I'll ask about Zometa and see if he's ever come across damage to the jaw, ulceration or necrosis.
Off to bed now. Pleased that you're healing well.
Gill X
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Hello all,
I have been enjoying your descriptions of autumnal changes and walks - the descriptions of the East Anglian coast particularly strike a chord with me. My father (who, following an out-of-the-blue head injury in his mid-70s is now like someone with advanced dementia) has lived on that coast with his partner for about 8 years. He is in Aldeburgh, Suffolk, so not that far from Norwich. Southwold is also familiar to me.
My dad enjoyed moved to Aldeburgh about four years before his accident, and , since then, it has actually been a brilliant place for him. It has just about been possible to keep him at home with a carer (and his partner is 15 years' younger than him and still very energetic) and he spends much of the time sitting in his chair gazing out at the sea and at the "promenaders" on the main coastal path. I think it is a very peaceful place when your mind is as beleaguered as his is.
Although what happened to him is terribly sad, we have, over time, adjusted to it, and the knowledge that he spends his days watching the sea and the wonderful East Anglian skies, fed and watered by kind people and his devoted partner, is comforting to me (relatively-speaking of course).
Of course, it also allows me to concentrate on my mother. Speaking of which (or I should probably say "speaking of whom") she is going to be starting paclitaxel next Tuesday after a 5 week break from chemo! We were worried about the length of break, but Dr L assured us that it wasn't a problem, and that the effects of the AC chemo (the positive effects against the cancer) would have carried on during that break; the effects don't just stop when you end the cycle.
My mum is doing much much better now, and , as I mentioned earlier, reluctant to start drug therapy again. However, as Gill/Susie said with the Zometa, if the cancer comes back, she doesn't want to think "what if I hadn't tried it.."
As discussed before, she will definitely be paying for it ( she hasn't told me how much). She will therefore be treated at the private hospital in Oxford, and have "private" consultations with Dr L as part of this.
It is, as you have all said, pretty shocking that this is the case, but , for now, we are going to direct our energy towards looking after her while she undertakes this new chemo-challenge. Afterwards, I think I will take this matter higher...
I do appreciate you all thinking of me and my mum, and sympathising with her regarding her ordeal.
Mary- it is comforting to hear that you were not able to finish the Taxol, but are almost 5 years' out of treatment doing well (and congratulations again on that). I seem to hear so many stories of people who took chemo in their stride, and, if they have "success stories", I don't feel I can extrapolate from them to my mum, who (whatever happens with Taxane) won't have completed the recommended cycle.
It does really help to hear from others who weren't able to complete the treatment but have still gone on to do well, so thank you for admitting that Taxol was really hard on you too.
I do know, ultimately, that luck plays a big part in one's outcome with cancer (luck in the doctors one has; the country one lives in; the body one inhabits; the forum one is on!) and I try not to nurture too many expectations re: my mum's outcome, either positive or negative. She is doing the best she can, given trying circumstances, and that is all any cancer patient does. That said, I am trying to encourage her to eat a bit more healthily and drink less, because what harm can it do!
Gill - it sounds as though your chemo is going pretty well so far. Susie, I hope the burn heals soon. Sylvia, I hope life is trundling along comfortably and that Raymond has recovered from his fall.
Flora x
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All best wishes for your mum with the Taxane, Flora.
Susie
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Thanks Susie- the spelling of "taxane" still always reverts to "taxmen" on my computer!
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LOL. More scary than the taxman.
Susie
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Don't know about that. Interesting image of little man with briefcase coursing through my veins now
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Hello Flora,
Aldeburgh is another favourite spot for us. Very dramatic brooding skies, crashing waves on some days, sunshine and the peaceful lapping of the waves against the pebble beach on others. So many little shops and quaint buildings for you to explore when you're able to visit too. I'm so sorry that your Dad's head injury has taken away his ability to enjoy his retirement here, it's seems cruel. He's so fortunate to have carers and such a devoted partner.
I'm pleased that your mum has found the confidence to continue her treatment. I hope this time all will run smoothly. I do think it's the right decision, who wants 'what ifs' hanging over them?
Many of us are angry at the scandal of your mother being forced to pay for treatment. You're right though, for the moment it makes sense to have the chemotherapy and then go into battle with the NHS Ethics Committee or your MP etc.
Flora, with so much going on in your life, do try to find time for yourself too.
Gill X
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Hello Gill,
Thank you for your last post. I agree with everything you say about the state of the NHS. I am not optimistic about its future. As the sixth wealthiest nation in the world, I think the powers that be should be ashamed of the inequality and poverty.
As for oral health, it is well known that gum disease (periodontal disease) is a big risk factor in heart disease. It is probably a risk factor in most chronic diseases because of a sick microbiome system in the gut, where the healthy bacteria are lacking, mainly due to the Western diet. It seems we are not eating enough fermented foods with the top one being sauerkraut, followed by plain yoghurt with live cultures, tempeh, kombucha, kefir and so on.
How are you feeling these days? Keep us informed, otherwise it is difficult for everyone to remember because you have not managed to put your details at the end of your posts.
Tell us a little more about yourself. What did you do as a career? Do you have any children? What are your main interests and hobbies? Have you any strong dislikes?
Keep well and keep happy.
Love.
Sylvia xxxx
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Hello Flora,
I just wanted to pop in to wish your mum luck with her chemotherapy treatment and I do hope the taxane drug paclitaxel (Taxol) will not upset her too much.
Raymond has recovered from his fall and we have had a very busy week carrying out our duties as directors here in our apartment complex.
Tell us a bit more about yourself and your mum. It is important not to define ourselves as cancer patients. We are whole people apart from this.
Take care. Best wishes to you and your mum.
Love.
Sylvia xxxx
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Hello Everyone
I've been off the boards for a while. I have hit my 3 year mark since diagnosis. My MO gave me a clean bill of health. So why do I have all these ailments? Lymphodema in my arm and my arthritis is terrible when my cortisone shots are due.
On the good front, there are new things coming out for Triple Negative, so we all have to hang on.
For those in treatment I send virtual hugs. Hydrate and eat when and what you can to keep up your strength.
For those just finishing treatment remember your body has been assaulted. Your mind ravaged. Give yourself time.
It will take months to feel back to a semblance of your prior self. For some of us, we will have a new normal. Adjusting is the word I think of post treatment. Adjusting to my new mind and view of things.
Thank you Sylvia and Mary for tirelessly keeping this thread and lifeline going. I appreciate you all.
Val
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Hello Val,
Congratulations on being three years out from diagnosis. Sorry to hear about the ongoing health issues though. Lymphodema and arthritis together sound like a particularly difficult combination to cope with.
I quite agree with what you say about the need to adjust ie giving our bodies and minds time to catch up. Being kind to ourselves after very busy and full lives can be a hard concept to take onboard. My own feeling would be that I simply don't have time. I'm only one treatment in, so it's quite possible that I'll change my mind.
I'm keeping hydrated which has never been a problem for me. Our water is from our private underground supply, it's untouched by added chemicals or the fertilizers and other toxins used in farming and tastes amazing. I'm sure I'm eating far too much though and am avoiding the scales for the moment.
Your right, in the the not too distant future, triple negative may well be treated very differently, and conventional chemotherapy with all it's side effects will be looked on as barbaric. My cancer is triple negative metaplastic and often doesn't have much of a response to chemotherapy, some subtypes seem to respond quite well though. I'm hoping for the best.
Take care,
Gill X
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Hi, Sylvia
It took me several days to get used to the new time, and now I just have to get used to my world being dark by 5 PM. I must remember to keep up intake of Vitamin D, because we never get much sunshine in November. I have been invited to Thanksgiving Dinner, and I can hardly believe so much time has passed so quickly.
Yes, Guy Fawkes Day. I watched a short mini-series at one time over the last year. It was called Gunpowder, and I didn't immediately realize it was based on Guy Fawkes and his doomed plot. I hadn't really ever given it much thought before, but it was a good mini-series.
Here the news is also incessantly about Donald Trump, and Theresa May gets a mention infrequently. Brexit vote seems like it was a long time ago. We have had another shooting by a disturbed person, many young lives lost.
I am very happy that Gill, Susie and Flora are here and that Adagio checks in sometimes, as does Kath. Also that we did hear from Hanieh and from Marias. but I also miss our friends from all over the world, I wish them all the very best, and hope they are doing well wherever they may be. I wonder if Hanieh ever made it to Turkey? I don't think she said. I'm glad that Marias was able to go back to work, hopefully she will get her strength back soon.
I see that your recent copy of What Doctors Don't Tell You, has an article about Dentistry's Secret Weapon. The end to drilling and root canals. It is about treatment with ozone. I had to look this up because it is not well-known over here as far as I know, and I go to a dentist and a periodontist regularly. It is probably something that is done by naturopathic-type dentists, but is probably not studied and approved by the FDA, so regular docs are not going to do it. I have an appt. with periodontist in a week or two, and I will ask about it. A few years ago my dentist recommended I have a root canal, and I refused and he said then I should have it pulled. I had to go to an oral surgeon to have it done, because it had twisted roots, and he said it was okay not to replace it because it was in the back and wouldn't interfere with my bite by its' absense. I had heard too much negative stuff about root canals but I hadn't heard about ozone treatment and I wouldn't have known where to go anyway. From what I have read, it sounds great, I hope it does really work and can become common. It should be much cheaper too, maybe?
I have to subscribe to What Doctors Don't tell You to read the article and I haven't yet decided if I want to order it, I am going to check it out for price and so on. It sounds like something I would enjoy.
I had a doc appt. yesterday and I will come back later and tell you about that.
I'll talk to you again soon, my friend. Love,
Mary
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Hello Sylvia,
I'm feeling extremely well and full of energy. I have my next chemotherapy next Thursday, this time with extra anti-nausea medication.
I'll fill in a few gaps for those who might be interested.
I have two children, both grew up and left Norfolk many years ago. My son , the elder of the two is an IT consultant and lives in Scotland, my daughter is a Doctor and lives in Hampshire. I'm also a Granny to a very mischievous 3 year old boy and a very sweet natured nine month old girl.
I gave up teaching (religious education and English) before the children came along which was actually a relief. Once the children were in school I began voluntary work as we felt that one wage was enough to keep us all going in the simple lifestyle we'd chosen. I've worked with homeless people, those who misuse various drugs and substances, and in a hospice. The most interesting was my time as an Appropriate Adult in Norwich custody suite - there might be a book there! I hope to go back to the hospice when this 'glitch' is out of the way. I miss being there, but as I worked very closely with patients directly on the ward it seemed sensible to take a break. I also needed to consider the infection risk. If I do feel that I can't face the wards again, I can still be involved. We are two years into a project to build a more spacious modern hospice. None of the cash will be provided by our NHS Trust, so once we have the money together the Hospice support group will own the building - we've already paid for the land. The Government will be unable to privatise us or close us.However, the staff will be provided by the NHS as this would be impossible to fund by ourselves, so we won't be entirely bombproof.
Fortunately, my husband and I are the Archivists for the Catholic Diocese of East Anglia, which is huge, covering Norfolk, Suffolk, Peterborough and Cambridgeshire, so I really don't have any time to think too much about my diagnosis and what the future might have in store.The older I get, the more I seem to have to do, I really don't have time to fit cancer into my schedule!
Take care of yourself and Raymond.
Love,
Gill X
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Hello Sylvia,
I'm feeling extremely well and full of energy. I have my next chemotherapy next Thursday, this time with extra anti-nausea medication.
I'll fill in a few gaps for those who might be interested.
I have two children, both grew up and left Norfolk many years ago. My son , the elder of the two is an IT consultant and lives in Scotland, my daughter is a Doctor and lives in Hampshire. I'm also a Granny to a very mischievous 3 year old boy and a very sweet natured nine month old girl.
I gave up teaching (religious education and English) before the children came along which was actually a relief. Once the children were in school I began voluntary work as we felt that one wage was enough to keep us all going in the simple lifestyle we'd chosen. I've worked with homeless people, those who misuse various drugs and substances, and in a hospice. The most interesting was my time as an Appropriate Adult in Norwich custody suite - there might be a book there! I hope to go back to the hospice when this 'glitch' is out of the way. I miss being there, but as I worked very closely with patients directly on the ward it seemed sensible to take a break. I also needed to consider the infection risk. If I do feel that I can't face the wards again, I can still be involved. We are two years into a project to build a more spacious modern hospice. None of the cash will be provided by our NHS Trust, so once we have the money together the Hospice support group will own the building - we've already paid for the land. The Government will be unable to privatise us or close us.However, the staff will be provided by the NHS as this would be impossible to fund by ourselves, so we won't be entirely bombproof.
Fortunately, my husband and I are the Archivists for the Catholic Diocese of East Anglia, which is huge, covering Norfolk, Suffolk, Peterborough and Cambridgeshire, so I really don't have any time to think too much about my diagnosis and what the future might have in store.The older I get, the more I seem to have to do, I really don't have time to fit cancer into my schedule!
Take care of yourself and Raymond.
Love,
Gill X
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HI, Gill
Isn't it wonderful how every cat has such a different personality? My last 2 cats were so different, one was very sweet and shy, she liked to lay in a little niche by my husband's chair and he would pet her. The other cat had a very different personality, she was not nice at all, and tolerated nobody but me. She would accept my husband but if anyone else was around she would hide, and if they did try to associate with her she would scratch and yowl. I don't know why she was so obnoxious, all the other animals I've had were very sweet. Ah well, I suppose there was a lesson in it!
Sorry about the tree diseases, I hate to hear that anywhere. We have them too, and for some things there aren't any cures. Other things can be sprayed for, but I really don't like all that spraying around of various toxins.
I wish you could come over here and get some wood for your heating system. I have so many downed trees in my woods from ice storms, droughts and then hard rains. They are lying everywhere.
I guess TNBC being 10-15% of women does seem like a lot, but I know a lot of women who have or had BC and have only known one with TNBC. She passed away last year, her cancer had metastasized to her lungs already when it was found. My BC surgeon told me that in her opinion, we should have breasts in our childbearing years, but then they should just wither up and disappear so as not to cause problems.
So women who get up early shouldn't have BC? I'll add it to my list of positives!
I'm glad you are feeling so well! You certainly do have a lot you are involved in, that should be a big positive for you, to have so much waiting for you when you finish treatment. And children and grandchildren, it sounds perfect. It's probably good to step away from crowded wards now, you can always go back if you want later.
I am also a Catholic, although I don't do any archiving. Our history is quite brief compared to yours, our county was settled by French, English and German emigrants in the early 1800s, and the Germans were the ones who stayed. They were predominantly Catholic and built many churches of the local limestone, the oldest being built in 1838, that are still in use today. Alas, some of them are in danger of being closed due to the priest shortage among other things. The church I attend was touch and go for a while, but it survived but was demoted to a chapel. Personally, I think the Vatican could sell some paintings and support a lot of missions, but that's just me. Nothing in this world is perfect, I suppose, even the people who tell us we should be more perfect!
I'll be back later, love
Mary
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