Dear Terry my heart goes out to you. It’s so bloody unfair. So sorry to hear about your mum and sister. A husband with memory problems as well, you have more that enough to occupy you. My advice is to put yourself first. Your health and welfare has to be your top priority. It is fantastic you are working at 71 but surely that entitles you to some perks maybe a nice break from caring while you employ someone for a few hours to clean and tidy your house and look after your husband’s needs while you swan around somewhere else going to see a film, having a nice meal and maybe catch up with friends. Some of mine are still alive even though I am now 68. Admittedly one has multiple myeloma which sucks but she is doing well and still keeps in touch. I first met her at about 12
Thank you for your comments. I have still had no reply from Oncology, even though I wrote to the Consultant over a month ago. I have left message with his sec, still no reply.
I had a telephone appointment with an oncologist last week and she told me letrozole does not cause high blood pressure. While she was on the phone I got the Breast Cancer Now booklet on letrozole and then returned to the phone where I read out the section on letrozole causing high blood pressure and high cholesterol. She knew about the cholesterol but not the other side effect. She’s rung me before and told me they are completely understaffed after covid, but I fear she’s also dealing with many kinds of breast cancer and only the oestrogen positive kinds are treated with Aromatase inhibitors and only post menopausal women get them. So maybe it’s easy to be one stage ahead of them. But it made me think you can’t be sure that the oncologist is any better to offer advice than you are yourself!
If you speak to her again @Seagulls point her in the direction of this NHS page where it quite clearly says “Letrozole can also increase your blood pressure and cholesterol levels. Your doctor will monitor these during your regular check-ups and recommend treatment if you need it.” I am currently wandering around like a zombie after having a 24 hour blood pressure monitor yesterday and overnight precisely for this reason.
How were the blood pressure readings?
I probably said before (? memory!) but sometimes it can feel like the song about the old woman who swallowed a fly…you’re given 1 drug to counteract another one, which counteracts the effects of the first one…ad infinitum!
I do wonder if the long term effects on the body of Estrogen suppressants are always picked up as side effects of the drug? Or if there are even studies of how seriously they impact women long-term? Once they’ve been proven to be part of the drop in recurrence cases, is anyone interested in their further study??
I hope your blood pressure stabilises. X
Thank you @Geeps. I handed the monitor back in at 8am yesterday morning and by 10am I had had a text from the surgery to say that my blood pressure was within normal range, although it did seem to be towards the top of that range to me and certainly higher than it has been before. My problem was always low blood pressure. Anyway, no further action necessary and no BP pills and their SE, thank goodness. I’m on a self-imposed break from the AI at the moment and am considering whether to make it permanent. So much insomnia, fatigue and brain fog to contend with, although that may be as a result of several years of unremitting stress and sadness including another death of a dear, dear family member last week. Difficult to know.
I had one of the overnight monitors and it started up my allergies again. I think they must disinfect them between uses and I am allergic to a bactericide with a very longwinded name that they seem to use all the time in the NHS
I am currently spotted red all over my chest and torso to my pubes, including inside the skin there. That was after my GP said moisturise and I used a Nivea lotion all over the area of surgery and reconstructed breast and diep area. I tried washing it off but resorted to antihistamine tablets in the end and it is finally going
I’m sorry to hear of so much sadness and stress for you. That also affects any other medical stresses your body is dealing with. I too was having trouble sleeping for various reasons - gone are the days of youth when we could sleep well on a knife edge!! I went to my surgeon at my annual mammogram because of what felt like permanent ‘bruises’ on my breast. Nothing to see but felt like I was black and blue! His advice? Give up caffeine! Told me to go cold-turkey for 4 weeks and the pain would go. Then I could decide how much I could tolerate if I wanted to go back to coffee drinking. I was so surprised (and sceptical!) that I really didn’t take in the details🤪 but it seems that the pain was from the effects of caffeine on the changes in the tissue of my breast caused by radiotherapy!
Well I stuck to my absolutely no caffeine regime and it has mostly improved things though the odd ‘bruise’ or two are stubbornly in the background, and it took longer than 4 weeks.
However, an unexpected bonus is that I sleep SO much better! Gone is the constant need to listen to my audiobook in order to get back to sleep in the wee small hours! I never drank coffee after about 2pm so I thought 2 or 3 cups over the morning wouldn’t affect my sleep at night. But it’s amazing how much caffeine can affect us. He told me no decaf - there’s still a tiny bit of caffeine!
I’ve found a yummy substitute and I have no wish to ‘use’ caffeine ever again, although I do have a decaf coffee when I’m out socialising!
I’ve never been a good sleeper. If I rubbed a lamp and a genie popped out looking a bit harassed, and said “look, I’m a bit busy so I can’t do the usual 3 wishes but I’ve got time for 1” I’d say, I’d like 7 hours uninterrupted sleep every night please. Never going to happen. As for coffee, I have one over breakfast and that is the only hot drink I have all day. Detest tea. For me, it’s non-negotiable but then I don’t have the bruises feeling. It’s the unremitting illness and death - mine and other peoples - that causes the mood that keeps me awake. That and things like the fear that my rugby team are going to be embarrassingly thrashed by their nearest, fiercest rivals this weekend or whether I can find the energy to clear the garage so I can put stuff from the box room in there so the bathroom fitter can use the box room as a work area - that kind of thing. None of it would seem so earth-shatteringly difficult to deal with if I had decent sleep.
Interesting … thank you.
Just replying to tag this post so I can find it if I want to revisit this idea.
Not sure I could forego all coffee, decaff inc. as, like Tigress, I detest tea (most of which also contains caffeine also).
Indeed! I have a friend who has just about every disaster happen to her including being widowed young and going through life with a neurological condition, various other uncountable ailments, breast cancer and now a stoma. She stays positive and relentlessly cheerful…but then what she CAN do is sleep for Wales! How, with all that going on, I don’t know! She attacks life with gusto and refuses to give in so perhaps she’s just exhausted every night?! But it seems to make all the difference.
My husband has been up dressed at 4am most mornings recently - I think that’s in part down to medication. Very draining isn’t it?
What I do find depressing is how easy it is for the conversation with my age group to be all about ailments! It’s SO depressing! When I’m with my son/s I see their eyes glaze over and I try to get the conversation away from our latest NHS experiences so that we can recapture the fun of a social gathering - No wonder kids avoid family gatherings!
Oh…as to bathrooms…I DREAM of finding a plumber! I would love to have the problem of clearing up for one (and I know your pain shifting stuff!!) but I’ve been trying to get a new bathroom for YEARS! They’re as rare as hens’ teeth around here…
I was so instantly horrified at the idea of foregoing my coffee that I didn’t take in everything the surgeon said to me - my brain froze! I never drink tea either but I thought I depended on my first morning coffee and I loved a frothy cappuccino when I went out! I never thought I’d do it. However I immediately went to the deli and bought a couple of coffee substitutes, which I was most surprised I liked. I thought I’d do the cold turkey thing to test his hypothesis - the only way. I thought I’d be counting the days. I got a few headaches as he’d warned me I would, but very soon I didn’t want my coffee any more. It was awkward at first when going out for a social drink as I was told no decaf either, so I had milk shakes, fruit juices - whatever. I have only gone back to the odd morning coffee or decaf after nearly 3 months. I love my substitute - Whole Earth Wake Up Coffee Alternative. And I can drink that anytime of the day!
Ooh poor you! My sons have sensitive skins and always have to be careful what they use. I remember one of them turning crimson when very young after the doc said E45 cream was NEVER a problem!
Allergies are weird- they skipped a generation in my family but my sons suffer all my mother’s allergies. I hope yours clear up soon!
Just to be clear, I am not a misery-guts when with people just when the light goes off and I lay there in silence. In fact, the weekend after next I have friends from Germany, California and Chile coming over to go to a Take That concert at the O2 Arena (yes I AM 68) and other assorted frivolities. I am hoping I have the energy for it all. Only downside, we have the funeral of my dear old friend right in the middle of their week stay but it will be darkness surrounded by light.
Thank you Tigress but I have read the NHS stuff and the BCN leaflet on letrozole and quoted the BCN info to the oncologist who rang me after she said that letrozole doesn’t cause high blood pressure. I am very well informed as I am a bit of a nerd and the internet is so easy to get information, way too much of it and some of very dubious value. I am pretty fed up with being treated for only one condition when I am most likely to die of heart disease or Alzheimer’s according to the statistics. I will be dead either way - my current life expectancy is around 86 and I am 70 in August 2025. I can’t wait to find out what I will be dying of on my death bed so I can tell my relatives,
“I told you I was ill!”
Seagulls
Oh I’m really sorry if I gave the impression I thought you were a miseryguts…I don’t mean that at all! This forum is all about what we can’t say when we’re in company - and sometimes desperately wanting to say it to someone! It’s the place to feel free to grumble or feel a bit sorry for ourselves without fear of censure and to get some heartwarming sympathy from those who know…so please forgive me if I appeared to criticise in any way. I mentioned my friend who seems so resilient just because she is exceptional and gives me the proverbial ‘kick up the bum’ sometimes. But she has her dark days I know. Her methods of coping don’t really work for me though - we’re all different in our coping.
I had a grumble about how older people talk about ailments - it’s only because it sometimes seems the automatic immediate topic of most of my ‘third age’ (for want of a better description!) relatives at family gatherings and I end up rather depressed. ( I sometimes think the younger generation are beginning to avoid the ‘and how are you?’ part of their initial greetings!)
Anyway…I have never been to a big pop concert . With all those friends the excitement will surely give you an energy boost Go show those kids! And yes, they’ll get you through the sad time too.
Apologies again X
You’re 2 months older than me!
Let’s plan our birthday celebration!!
You’re right - I also keep thinking they treat disease 1 with drug A which causes countless side-effects.
Drugs B, C etc are doled out for side-effects which cause disease 2 and 3 etc
Then depression sets in so drug 4 is offered…
which has side-effects…
But as long as you don’t die of breast cancer the oncologists can say they cured you!!! And that goes on their statistics as a +.
Am I being cynical???
. With all those friends the excitement will surely give you an energy boost 
Go show those kids! And yes, they’ll get you through the sad time too.