Come and tell me your dull and unexciting news 19: Calmly through the day

[MissConductUS]

I've started a new one. Please join us and share the boring and mundane things happening in your world. It will be calming for all.

Here is the link to the prior thread:

Come and tell me your dull and unexciting news 18: Calmly through the day

Sending hugs @Silkieschickens.

It was awful today, the doctors were too busy to answer any questions and said pointless, might be pointless to them, but I want to know and now have no one to ask for 2 weeks and doubt will be better then as was same last time, just left with nurse who is lovely. Just told ct but no mention of biopsy and that will be within a few days.

So sorry Silkie that level of care just isn’t good enough. Is it worth contacting Macmillan or similar for someone to talk through options/likely outcomes? Or your GP?

Thanks Helena I have just e-mailed GP, they won't see until Monday and I doubt they have the specialist knowledge but they may know parts of it. I can phone the breast care nurse but she is lovely but it needs a doctor to answer the questions and ideally adrenal specialist though any doctor would would answer a question would be a start. I may go private but no insurance and you really should not have to for stage 4 cancer but the 2 weeks between appointments and cancelling surgery is worrying me as well and I won't be needing my pension now. It looks a very bleak diagnosis but there is no-one to help other than the nurse but that is more practical and emotional and she was also telling the doctor to give me positive news and he was just looking at her like do you want me to lie? I have messaged a lady I used to know who is a hospital doctor and so is her husband and they seemed to have a doctors network.

Bloody hell Silkies that must have been hell to take in. You poor sod, I hope they get their arses into gear and get you sorted soonest. Cancer is a bastard, let's hope you can live with it llong enough to get to where you're counted as old. I believe that's now 90. Good luck my dear, you deserve it.

Thanks Doctor If its at stage 4 the average person with lobular lives 3 years, suspect adrenal may worsen those odds but will see, that's one question I wanted to ask though did get impression they don't know too much about adrenal. 35% don't make a year. Just really sad for my kids especially my little boy who is completely dependent on me, asd and almost mute. DH is great at practical things but useless at emotional ones or school problems. DD said she will do that but she is so young and has enough on.

Silkies I'm angry on your behalf reading your updates. You have been let down with being dismissed in the past, and not being given information and understanding now. I know they're rushed off their feet but there's no excuse for leaving you with questions unanswered.
Sending love your way.

Hope you’re coping as ok as you can @Silkieschickens I know hospitals are busy but there should be more support for you. Just in case you need it McMillan have a helpline.

www.macmillan.org.uk/about-us/contact-us

There is not much more I can say after my initial outburst.

Silkie I hope you can navigate your system to give you the best outcome possible.

Thanks all. I am not having any luck with system here, DH is looking if can get treated in France and will look into shifting to private or a London hospital, private will be seriously expensive but there is no way will be using any of my pension savings now. Really hacked off with it though its stressful enough without not having a doctor to talk to and having to fight for treatment.

I’m so sorry for all you’re going through silkie. I only know one person who’s had adrenal gland cancer. He was diagnosed in 2014, and the cancer then spread to his lungs. He’s been living with stage 4 cancer since then. He’s still alive, and actually doing much better recently than he was during the worst of the treatment in the early days.

It’s the lung cancer that’s been the real challenge. He’s taken part in some clinical trials that have worked.

He had to give up work immediately, and they needed a lot of family support during treatment, but his wife went back to work ft after the first year.

I hope you have more answers soon. Gentle hugs.

Well, recently I went to Kew for the Christmas light and managed to walk all along the route with just a very quick sit down. My Rheumatoid Arthritis* was playing up so I was proud to have achieved this. Sadly, I cannot tell I managed to get some good photographs as I am crap on that front. Luckily, one of my Hampshire friends put up some lovely videos on our whatsapp page so at least I can show other people what I saw!!!

• obvs my troubles are nothing in comparison to Silkies :( I am sorry to hear this/

DD sent this from her way to meet a friend. It's the entrance to the Zoo.

Silkie Upthread you encouraged us to keep posting about everyday things and so I'll do and I hope you do not mind?

Silkie, it's awful that you are getting such shitty support. I don't like to criticize the NHS but it's easy to see why so many Brits come to New York for cancer treatment.

Prok, that's a lovely picture. I'm going to ask DH to get the tree out of the attic and put it up today. I've already rearranged the furniture to accommodate it. The cats love the tree. They hide under it.

I am still confined to my room I will get a 'Bürgertest' tomorrow to see if things have improved.
DD's said Morose Pigeon' was off with her because the water in its bowl was frozen over.

ZZ, how was your daughter's trip back to college and when will she be home for Christmas? And how is she liking it so far?

Deathray, what treatment are you getting for your RA? There are some supplements that may be helpful, like curcumin and Boswellia.

Activity at the birdfeeder has picked up with the cold weather. I'm about to have a bowl of Legal Seafood clam chowder for lunch.

I hope this is not too exciting for this thread but I had two walks today - my usual one for just over an hour and then s second one to local fair and Asda to pick up some things that I forgot to put on the weeks grocery delivery.

I watched a pretty rubbish Christmas film on Netflix ‘a castle for Christmas’ this evening. I hope watching strictly tonight will be better.

DD announced her intention of baking tonight.
We will see ....

@Silkieschickens

@Silkieschickens that was from IKEA website just now

I’ve baked my Christmas cake this afternoon. DC1 is out babysitting in the village again, repeat booking, which I said must mean the kids liked her the first time! She is delighted as they are good payers.

She and I went to John Lewis to do some Christmas shopping this morning, was quite successful.

@MissConductUS

ZZ, how was your daughter's trip back to college and when will she be home for Christmas? And how is she liking it so far?

Deathray, what treatment are you getting for your RA? There are some supplements that may be helpful, like curcumin and Boswellia.

Activity at the birdfeeder has picked up with the cold weather. I'm about to have a bowl of Legal Seafood clam chowder for lunch.

Thanks for asking. Her trip back after Thanksgiving was surprisingly easy. It's turning out to be really convenient that she has a car and she can get herself to college and back - I think we're just about convinced she should keep it next semester at least. It will also be handy to have the car when we have potentially 6 drivers living at home next summer, if they all come home again.

She is loving college, but not so keen on her accommodation (she's one of the ones who's been off campus because of the residence hall damage). She really REALLY looking forward to moving onto campus January. She knows where her room will be, she's met her roommate, and she's really excited to be there.

She's struggled to sign up to classes for next semester - I guess she got one of the later assigned time/dates this time? I think she's got into 2 out of 4, and she's just waiting to hear about the rest.

She keeps getting really good grades, and she says she's learning absolutely loads, especially about how to write better. The feedback she's been getting is in-depth and thoughtful. The other day she did a Spanish presentation, and afterwards everyone was saying what a great job she'd done - I think the subtext was 'Blimey, the quiet girl in the corner speaks! And quite well!' She got 100%.

I sound like I'm bragging, but she struggles with anxiety, and she was really worried that the academics would be too difficult, so it's a huge relief to her that actually she can do this. She's not naturally academic, and she isn't the most fluent writer, but working hard seems to be paying off.

How's your daughter doing?

Oh I meant to say she's driving home this Friday, and her big sister is also flying home the same day, so I'll finally have my 3 kids under one roof for the first time since July.

Welcome, @DiorForBreakfast, and thanks for sharing your shopping assistance. Feel free to pull up a chair and have a cuppa.

ZZ, that's great that your daughter is doing so well in college and likes it. Ours loves it too and has done really well academically. Her neurobiology prof was impressed enough to offer her the paid internship over the summer and she's having a good fall semester. She would love to have a car, but unfortunately, DS has the only spare set of wheels. He may be buying one when he graduates next spring, in which case she can have the 2012 he's driving now.

I think she's done on the 15th, but I don't know if that's absolutely finalized at this point. By the way, you did not sound like you were bragging. If she wasn't capable of doing the work they probably would not have admitted her. But it is a big transition from high school, so some anxiety is natural. Being able to live on campus will be a lovely change for her.

DH put the Christmas tree up and got the lights plugged in, so I will probably start decorating tomorrow.

Thanks very much ZZ, glad your friend has managed to survive that long. Its fine for me not to work again if that is needed though the lovely Australian professor keeps sending me work despite me explaining. Its fascinating work though.

Glad you had a nice time at Kew Death and thanks. I used to go to Kew a lot though more in better weather else I used to hide in the tropical greenhouses. DS loves the plants there, he always used to hunt out the venus fly trap and banana trees.

Lovely picture Prok and its lovely to see things and much more in the spirit of the thread than my grim news.

Thanks MissC I understand people going to the US too though its the prices put me off. DHs friend also thinks I might just qualify for free treatment in France, I have savings for French prices anyway and their survival rates are quite a bit better than here. Though are investigating if stage 4 treatment is different there. Found out here from a doctor it is endocrine therapy only normally here and as both are contained locally from scans would prefer surgery on both and maybe radio then the hormone stuff. But will try my hospital on Monday and see if I can get any information. I am puzzled how another CT will help though if they can track old CT that would help as can measure size growth assuming same side, recorded as opposite sides but odd would disappear untreated one side and appear on other side in 3.5 years.

Thanks very much Dior Currently they say they will cancel surgery so don't need the chair atm but hopefully will change plan back to it.