Calling all triple negative breast cancer patients in the UK
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Hi Susie,
Transfusion called off. Bloods were contaminated with saline.
Agree about getting your moneys worth. Felbrigg Hall isnt on the grand scale of Blickling, but worth visiting, think it's NT.
Gill X
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Hi Gill,
Felbrigg Hall won't be open while I'm there.
What a depressing place to find yourself! You must be counting the minutes.
Susie x
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Hi Susie,
No-one knows anything here. The PICC line team haven't been to unblock my line and it's almost clocking off time. Thinking of doing a runner.
Michael has promised that I'll never end up in this place. Going to make him sign in blood as soon as we're home.
There's a Tudor village in Suffolk - Lavenham. If it snows you'll transported to another world. We visited during last year's snow. Have a walk round then call in at the lovely Swan Hotel for afternoon tea.
Love,
Gill x
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Hello, Gill,
I've been to Lavenham, though not in the snow -- on a coach trip with a Meetup group, as it happens. Cromer still; showing dry and breezy from Christmas Eve.
I have had two (different) Christmas cards depicting a hare and a full moon. Why did that make them think of me?!?
Sorry you're being let down so badly. It's too early for them all to be drunk for Christmas.
Susie XX
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Hi Susie,
A hare gazing at the moon, symbol of fertility - be very suspicious or flattered.
Cock up on the notes front. PICC team weren't aware of my blocked line. Fortuitously, just as I was about to leave I suddenly became ill. Very hot, shivery and dizzy. Temperature up again. Lovely young Doctor with a sense of humour tells me to stay put. Sent the husband out for chips as I'd missed supper. Not remotely healthy but dry and crisp, so lovely.
Weather in Norwich has been mostly dry and sunny. Holt usually has very pretty Christmas decorations and a ramble around Blakeney followed by lunch at The Moorings is worth doing.
Gill x
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Hello,
Very touched to read the responses to my “Woman’s Own” cover story of a posting- detailing all the people who seem to have cancer in my life. Sorry-it did all sound rather dramatic- but that was how everything felt a few weeks’ ago. Nice to have regained a bit of perspective over it all.
Gill- I wanted to check in with you as you are clearly having an exhausting time on the FEC- rather reminiscent of what went on with my mum. She, like you, was in and out of hospital a lot for neutropenic sepsis, on IV drips twice, and queried for a blood transfusion.
I’m sorry you are having a horrible time- but you have managed all your cycles- that’s brilliant! My mum only managed two- it was the heart problems (AF) that led the consultant to call a halt to that chemo. So( not that this is a competition) you have done pretty well in my books!
Also, in case this is helpful, my mum had 5 weeks to recover from the AC before starting the pacliotaxol! And the consultant didn’t seem to think this was a huge problem in terms of efficacy of treatment! So if you do need a break before starting the next stage, don’t worry too much.
I understand that older women’s bone marrow reserves tend to get more depleted during chemo than younger women’s- so I don’t think it is that surprising that you and my mum( think you are in your 60s? She is in her 70s) have had these low neutrophil problems.
Hope the chips did the job! Norwich hospital food does not sound appealing in the slightest!
I loved all your descriptions of Norfolk villages in winter. Next time I go to Aldeburgh( trip planned in the NY) to see my aging dad, I might make a detour to Holt or Lavenham!
Anyway, just wanted to send my best wishes - as I remember well the many temperature fluctuations my mum had during the AC- and the endless to-ing and fro-ing from hospital.Hope you’re out soon.
Btw Susie, we asked about Filgrastim for my mum with the taxane, but she’s doing 12 weeks with infusions each week( at least in theory) and apparently this doesn’t give Filgrastim time to work properly. Thanks for the suggestion though.
The dose has now been lowered to give her a better chance of having weekly infusions from now on and - for this week at least- this seems to be working. Her neutrophil level is much better.
Gill, do take heart from my mother’s experience with pacliotaxol so far. It has been such a different experience to the AC, where she felt awful from the beginning. She is living an almost normal life on this chemo.
Hello to all...
Flora x
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Hello Flora,
I see what you mean about Filgrastim. I was having chemo every three weeks, starting the injections two days later and having them for eight days.
The fact that your Mum is doing so much better on the taxane shows how differently each individual reacts. I had no problems with FEC but found the taxane much harder.
Good luck with all the people you are supporting.,
Susie x
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Hello Flora,
I'm not at all surprised you were overwhelmed, you've had an appalling year. You must have felt that you'd suddenly landed on Planet Cancer. Your mum's experience has been very difficult and I don't just mean her reaction to chemotherapy. You've needed to fight so hard for treatment. Also, I cannot imagine the pain of such a young family member being diagnosed with a brain tumour. Although the prognosis is excellent.
As I'm no longer neutropenic, but do still have some kind of mystery infection that won't respond to the antibiotics. I was moved to a six bedded bay late last night. As this ward is largely end of life and most patients are restless overnight, the scene that met me was fairly depressing. Different story this morning. I was up at the crack of dawn for a shower - hadn't had one since Saturday, in a very small way I've resumed my Hospice volunteer role, listening to everyone's cancer story. I feel useful for the first time in days.
My Oncologist is prescribing Filgrastim for the 3 days following chemotherapy. At sixty-three, I agree that my bone marrow will be working less efficiently than when I was a young thing. After sixty, the body isn't what it was. Strangely, I still feel about thirty-five. Oh well!
Its very reassuring to know that Taxol is easier. A Number of ex-patients have told me this. FEC has been much worse than I'd imagined.
I never tire of Lavenham. It's small, but everything is so pretty in Summer. Do book afternoon tea at the Swan and there's a very good ice-cream parlour on the high Street too. Beginning to wonder why I talk about food so much. Love Aldeburgh too, always visit the famous fish and chip shop.
Flora, I do hope that you and those you love have a New Year you will all look back on with Huge smiles on your faces
Love,
Gill X
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HI, Susie
Sorry to disappoint you and Gill, but my fish supper was not deep-fried, I didn't want to clean up the mess. I rolled it in cornmeal and cooked it in a little avocado oil, oh and lemon pepper. But never fear, if you go into any small restaurant around here deep-fried fish is on every menu, usually catfish. Sometimes some other white fish. And french fries. Are french fries the same thing as chips? And yes, delicious. I have read that French Fries are the worst thing to eat, health-wise.
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Hi, Mary
English chips tend to be thick whereas French fries are skinny. We normally have thick chips with our battered cod or haddock, and maybe some mushy peas.
What Americans call chips, we call crisps.
Susie x
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Thanks Susie, for clearing that up for me. Although we do have French fries of all different sizes here. Mushy peas don't sound too good, I think here about the only vegetable offered with fried fish and fries is catsup( or ketchup)! I think it was George HW Bush who named catsup as a vegetable, but not sure.
Mary
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Gill,
I'm sure you are cheering up your room full of patients, can't believe you were almost out the door and then struck down by fever again, that's crazy! Hopefully they will figure this out soon!
I'm glad they are offering the Filgrastim after next chemo sessions, so perhaps you will get through the T without interruption.
Off again, Mary
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Hi Mary,
Feeling much better this afternoon. Temperature down to 36.8. Source of infection still unknown. Isn't it strange that I've lived my entire life without having a clue what my temperature was? Looms very large these days.
Actually enjoying myself on the ward! My on/off blood transfusion is now on and I'll be having it very soon, then home.
Spoke to soon. Infusion has failed as PICC line is blocked. I must carry a gremlin around with me.
Mushy peas are wonderful. I sprinkle white pepper on mine.
I'll leave you to your Christmas preparations now. Have fun.
Gill X
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Hello Susie, Gill, Flora, Mary and viewfinder,
Thank you for all your posts.
The Meet-up groups in London sound very useful. Here in Exmouth we do have groups under the University of the Third Age. I have not joined any because I am too busy and also having done two degrees and a diploma in Social Work, I have not felt inclined to join anything.
Raymond and I did buy a Freesat box to plug into the television and to our surprise found it gave us TV5monde in French and it has had excellent programmes and films. We have watched that most of the time, along with France24, which is news and is in English, but from Paris, but we also watch a lot of RT. Unfortunately three weeks ago the TV5monde was removed. We have joined others in complaining and Raymond has been trying to find a way to get the channel back, via the computer.
When are you off to Norfolk?
To viewfinder, I am following details about your roots with great interest.
I was also interested in what you said about the Royal Family.
I am one citizen that is not devoted in any way to the Royal family. In actual fact, in this modern day and age, we are not even citizens. We are 'subjects to Her Majesty'! I do not think we can really call ourselves a democracy, which is based on equality and the sovereignty of the people, when we have an inherited monarchy, who live in the lap of luxury while others sleep on the streets. We have a 'let them eat cake' syndrome from the elite establishment. I would much prefer an elected head of state that we can kick out when we are fed up with them. Even our voting system is rigged.
How are you feeling so soon after finishing your treatment? According to your notes, it looks as though you just had surgery and then went on anti-hormonal medication. Are you on aromatase inhibitors to control oestrogen or tamoxifen to do the same? They do have long-term side effects.
Wishing you a merry Christmas and a Happy, Healthy New Year for you and your sister.
To Gill, thank you for your post. During my treatment I just took whatever I thought would do me good and get me through. I do not take much notice of orthodox medicine when it comes to vitamins and minerals, good nutrition and alternative or homeopathic treatment. None of them can be as toxic as chemotherapy or radiotherapy.
Your hospital environment does not sound very pleasant. During the five days I was in hospital after my mastectomy I found the hospital food left much to be desired. I survived on mainly jacket potatoes and vegetables. In this country there is too much emphasis on meat, poultry, dairy foods, processed and junk foods, none of which I eat.
I was sorry to read that your blood was contaminated by the saline from the flush. What with that and the PICC line being blocked, I do not know how you have coped.
I have found that, during all the years that I have been doing this thread and reading the TNs, patients seem to find the two taxane drugs more challenging that EC. I do not know too much about the drug fluorouracil (F) and am wondering whether that has affected you. I think it is more common to use EC (epirubicin and cyclophosphomide) and AC (Adriamycin, brand name for doxorubicin, and cyclophosphomide). I do not know why some are given fluorouracil (F). Have you asked your oncologist why you got this extra drug? I do remember that my oncologist told me that epirubicin and doxorubicin can damage the heart. I had ECGs before and after treatment and all was normal.
I think I agree with Flora about not being too hasty to get on to the taxane drug.
I do hope the medical team find out what your source of infection is. I do hope you have not picked up any of the hospital bugs and I really hope you will soon be out of the hospital.
I was surprised to learn that you had not been told to take your temperature every day while on chemotherapy. When I was going through treatment I was given a thermometer that was like a strip that I used to place on my forehead. I used to check my temperature every morning and Raymond would take my blood pressure for me. I used to drink lots of water throughout the day.
I do not know how the medical staff at your hospital thought they could carry out a blood transfusion with your PICC line blocked! I do hope you have now had your PICC line unblocked and your blood transfusion carried out successfully and that you have managed to escape from the hospital and are at hope enjoying a balanced meal.
To Flora,
Thank you for popping in to give your support to Gill. I do hope your mum is feeling well and that you are all ready for Christmas. Wishing you, your mum and your family a Happy, Healthy New Year.
Hello Mary,
Thank you for popping in to support Gill. She really needs us all at this time. We seem to be a smaller group than in the past, but I think we have rallied round Gill and helped her to get through this.
I have been half expecting Peter from Norfolk to be popping in but he may be away in warmer climes.
All the other posters are very quiet at the moment.
That is all for now.
Love.
Sylvia xxxx
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Hello, Sylvia
I was specifically told not to take my temperature every day during chemotherapy --not to get obsessed about it, but only to take it if I felt feverish or otherwise unwell. I did end up taking it most days even though I felt fine!
I am going to Cromer in Norfolk. Oh, I do like to be beside the seaside.
Susie
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Gill (and others), I wish you the very best with all my heart and sorry all you're going through. Know that you're inspirations and very brave! Brave, too, for eating some of that food you have been mentioning; most of which I've never heard...except Chips...or is it Crisps (aka French Fries)? Mushy peas?! Peas are my least favorite food so I can't even think about this.
I too, think, the Royal family is ostentatious but I understand it brings in a lot of money and tourism to your country, thus justified in the minds of some. Maybe another time, but I just can't get started now on the poor in my county. And the middle class, will soon be poor if they don't do something about healthcare and giving away so much money to other countries! I believe in helping but their is a limit!
I must update my notes. I had 16 sessions of radiation and, one month later, have been on Anastrozole (aromatase inhibitor) for about two months. Except for fatigue that I've never before experienced, radiation went well. I'm also aware of the long-term side effects of Anastrozole and my oncologist is monitoring it carefully. Fortunately, I've had few side effects thus far.
I hope this photo of an early morning sunrise I took in South Florida many years ago will heighten the warmth of the holiday season for all of you and your families!
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Hello Sylvia,
You're absolutely right, my friends on the thread have carried me through this horrible journey.
I may have said something confusing about temperature monitoring. All patients here are told to buy an accurate digital thermometer before treatment. We have to take our temperature in the morning and in the evening. We are given an Acute Oncology Passport which gives us access to the hospital's 24 hour/7 day a week helpline. We have to call the helpline if our temperature rises above 37.5. Sepsis is a very real danger and can kill so quickly, I hadn't quite taken onboard just how quickly.
I was given Fluoraouracil to ensure that I stood the best possible chance of curing this very difficult to treat cancer. Metaplastic breast cancer is often unresponsive to chemotherapy, unlike triple negative cancer which has an excellent response. My cancer has been hit hard in the hope that some of the chemotherapy works to an extent. Without treatment my prognosis was only 50-50.
My PICC line responded after several attempts to flush it, by several different nurses. Thankfully the blood went in eventually. However bloods can no longer be taken from the PICC and the team said flushing was very difficult and as it often blocked the line probably had small clots forming along it. I'll ask for another line.
Life improved hugely once I was taken out of the gloomy isolated room looking out onto a brick wall. The bay became much more cheerful during the day and the B/C patient in the bed opposite had a good sense of humour. I've laughed so much today. Food dreadful though.
I had an ECG immediately prior to FEC, but haven't been offered another. I'll ask about this.
Hope the weather in Exmouth has finally settled.
Love,
Gill X
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Hi Susie,
Take your cossie. You won't want to miss the traditional Cromer Boxing Day swim.
Gill x
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Er, thanks, Gill.
I am very much a fair-weather swimmer.
I had an ECG before chemotherapy to ensure that I was fit enough to have it. I don't think they repeat it. My oncologist said that chemo can damage the heart but that it's long-term damage, in that the arteries may fur up earlier than they otherwise would.
Susie x
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Hello Susie,
It looks as though we have all had variations in our treatment when it comes to different things but the treatment is always some kind of surgery, not always chemotherapy and not always radiotherapy, but a lot of the time we do have all three.
Back in 2005/6 I found everything very organised and methodical. Once I was past the official diagnosis and the medical team were ready to start my treatment, I was told I would have chemotherapy first to try to shrink the tumour to make surgery easier and then I would have surgery for a mastectomy, would finish up with radiotherapy and then start regular check ups.
Before that I had a CT scan and a bone nuclide scan as well as an ECG. After I had finished all the treatments I had the two scans again and an ECG again. I was told everything was in order. I had my pathology report, but was not given it, but I was told it was excellent and that I was NED (no evidence of disease).
Because I had high levels of calcium in the blood, but everything was clear, the oncologist did a test for an overactive parathyroid gland and this proved I had an overactive parathyroid. I later had surgery for this. It was quite a shock to be diagnosed both with breast cancer and hyperparathyroidism disease. I was coming up for 63 and had never had any illnesses.
I did eventually have a bone density scan and was told I had osteoporosis and that seemed to be largely a result of the breast cancer treatment, but the parathyroid problem probably helped as well.
All three parts of the cancer treatment cause side effects and it could well be that they do not show up immediately. Our bodies have been poisoned and traumatised through our treatment.
Raymond and I went to Cromer a couple of times when we lived in Essex. We liked it but it was cold! We also liked to go to Frinton because the air there seemed to clear Raymond's allergies.
Have a good Christmas, Susie, and I do enjoy the sense of humour that comes out in your posts.
Merry Christmas and a Happy New Year.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for that post and for all the extra details.
I was glad to read that you have been doing a lot of laughing. That is the best medicine.
I think it is a good idea to have an ECG now that you have finished FEC. The taxanes also affect the heart so you should have ECGs while on them.
I am hoping that you are back home now where I know your husband, Michael, will take good care of you.
Make sure you get some rest and try to build up your strength.
Best wishes for Christmas and the New Year.
Love.
Sylvia xxxx
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Hello viewfinder,
Thank you for your latest post. Peas are a very important source of zinc, which os essential to fight against infection.
Judging by what you have said in this post, I think we probably share a lot of views in common. As you say, let us leave it to another time. It is Christmas and we must try to be full of good cheer!
Thank you for the lovely photograph taken in South Florida.
That is all for now.
Merry Christmas and a Happy New Year.
Love.
Sylvia xxxx
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Hello everyone,
I suppose all of you are now busy preparing for Christmas. Raymond and I do not make much fuss about it because of all the commercialism.
I do hope that our normal posters who have been absent for a while will come back after the Christmas madness.
In the meantime, I want to send special greeting to you and wish you all a Happy New Year.
Canada – adagio, Nancy53 and Moth.
US – Mary, Val, Monica.
Australia – Kathseward, Cocooncat and I know there are some others but I cannot remember the names at the moment.
Iran – Hanieh – where oh where are you??
Colombia – Marias – what has happened to you??
Singapore – Lou – we miss you.
Philippines - Gina – we miss your humour and liveliness.
India – the two ladies there – am still drinking holy basil, Tulsi tea and I do love it.
I do hope I have not forgotten anyone.
Best wishes to all of you and a Happy, Healthy New Year.
Sylvia xxxx
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Hello everyone again,
I forgot to mention helenlouise in Australia.
I have been having a look through some of the pages on the thread and it makes me realise just how much time I have spent on the thread and how many posts I have made.
I started looking at the first pages and it brought back so many memories.
The first poster was FreddieDLH – UK – and among the early posters were Jinglebell (Mary), hymil and Spammy61. I do hope you are all out there and living life to the full.
I then started reading the posts from some of the prolific posters in the earlier days. I was thinking of Josephine who had mets, of Karen3 up in Leeds and of my special friend Sam52, all in the UK. There was the very lively and funny Bernie Ellen from Ireland and Maria Malta.
There were many interesting posts from prolific posting American women, such as Bak94, Gillyone, Christina1961, Mccrimmon324. They posted for a long time. I do hope you are all well and enjoying life.
I must mention the male posters, Peter and Liz, Chatterbox (Michael) and breastcancer husband (Tom). You were all such an asset to the thread. I hope all is well with you and season's greetings.
This Christmas time seems to be making me feel nostalgic.
On Thursday December 20th I marked 13 ½ years since my diagnosis. To quote Chris Woollams, we are in remission and it could be that the remission becomes permanent. I do hope that for all of us.
Best wishes.
Sylvia xxxx
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Hi, Gill
I know what you mean about now knowing what temp is, I have a thermometer and a blood pressure cuff, actually have them mostly because of husband's needs, but I check these things now too. Always glad, even if I feel bad if I don't have a fever. And when I was on chemo I could always tell if white cells were getting low, I would feel very weak. The lowest BP I recall during chemo was 70/40, normal is 120/80. The lower the BP the weaker you will be.
I admire your good cheer and gumption throughout all this, I'm glad you were moved out of your lonely room.
Sorry I was disrespectful of mushy peas, guess what I cooked today? Split peas and a handful of lentils, a very thick and delicious dish. I guess I do like mushy peas, hmmmmm.
Sorry about the PICC line, my husband's line never had a problem, but then, he had me taking care of it. You only have hospital staff!
I think I finally got the Christmas spirit today, and I'll tell you why. We (the choir) ran through all our songs for Midnight Mass last night and one was Silent Night. Today I read an article about the author of the song, Mr. Mohr. And how That was the song that really brought 2 warring sides together in WWI, one side German and the other side British, French and Belgian. On Christmas Eve the soldiers came out of their trenches and sang in different languages, but the song all the soldiers knew was Silent Night. (Although I looked it up later and read it was really Adeste Fideles in Latin!) Oh well, while reading about Silent Night, and how it became a beloved Christmas song, I started crying and for me, that was the Christmas spirit finally within me.
I think Sylvia touched on it too, it is a time of year when emotions are close to the surface and memories are everywhere. Past Christmases come back to mind, and affect one like no other time in the year, that is my observation anyway.
Back to the present, my heart function was tested before chemo but not after. I asked why not, and was told because I had no symptoms that demanded it. So I left it there, and hope all is okay.
So I will get back to work and you must get back to work getting stronger and escaping the hospital! Glad you are laughing!
Talk to you soon, love, Mary
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To UK residents,
What is bubble and squeak? I was offered it for breakfast when flying on British Airways in 2017, and I took it but it was rather green and odd. I am not squeamish about food, but never did figure it out exactly, can't say it was tasty.
What is a cossie?
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Hi Sylvia
You did start this thread quite a while ago, did you have any idea then that it would go on this long? Yet here we all are, and you are still counseling all of us as you did others back then.
Christmas is time for nostalgia, all the old songs bring up old memories. I also hope that the people who used to post here are doing well.
Even though you and Raymond don't make a fuss over Christmas, you are wishing all of us a Merry Christmas, that is very nice. I wish it for you too. Perhaps you should take a tiny break and eat something sinful like a cookie with your green tea! Snack foods of all kinds are everywhere now, some people will make or have made hundreds of cookies and all kinds of candy. Then in January many people go on severe diets, where they give up all sugary foods, carbs, alcohol etc and eat very little, hoping to lose some of the weight they have gained since Thanksgiving. It's all kind of crazy.
I need to go for now, I will talk to you soon,
Love, Mary
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Hi Mary,
Bubble & Squeak is a dish of leftover mashed potato and cabbage which is mixed together and fried into little cakes. Nowadays, of course, it's not usually made from leftovers but created from fresh ingredients. I really like it.
I was in Trafalgar Square yesterday morning and a busker was singing a song about 'fish & chips and mushy peas'.
Susie x
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Thanks, Susie
I like potatoes and I like cabbage, but this dish was just odd. I will just assume it was typical airline version of actual food, not to be compared with the real thing.
Mary
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Hello Viewfinder,
What a beautiful sunrise. We have several sunrises on the thread and all different. Sylvia was experiencing stormy weather down in Exmouth and her sunrise reflected the threatening weather to come. In the UK we still say 'red sky at night, shepherd's delight, red sky in the morning, shepherd's warning'. Works quite well most of the time. In our small village we do have a shepherdess who grazes her rescue sheep on a number of fields close by, perhaps I should ask her, though she probably has a weather app on her Smartphone these days.
I think it did take a certain amount of bravery to tackle the hospital food. The puddings were quite reasonable in the beginning and I resorted to unhealthy double portions when the main meals were particularly bad. The undercooked grey jacket potato was a definite no.
As for any of us being brave, I guess we all are. We go through the treatment because there's no choice. I absolutely understand your concerns for your sister. Flora who comments on the thread from time to time is very worried for her mother. Watching a loved one suffer must be heartbreaking. Michael looks so tired these days. He says he feels helpless at times. I also believe that waiting for surgery and then for chemotherapy is more difficult than the reality of treatment.
I wish you all the peace that Christmas can bring and a New Year that brings you and your family happier news than 2018 ever did. It all takes time!
Remember to look after yourself too. Quite a few patients find radiotherapy exhausting, so take plenty of time to rest and be kind to yourself.
Love,
Gill X
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