AWAKE.........

Thanks Grogg and Moomy,

Again I did not get link on my I phone so I tried on I pad and the link worked ok. Little gremlins again !

No problem,  

I'm taking Eribulin, which is on a 3 week cycle. I have treatments on day 1 & day 8 of each cycle. I haven't had that pattern for chemo before. It has always been treatment on day one only, and the cycle has been 7 or 21 days.

Treatment day is the typical hurry up then wait routine. Blood tests, then wait a couple of hours for lab results. Then clinic appointment to review the results and decide whether I'm fit for treatment, followed by another couple of hours wait while the pharmacy prepare the drug. Then, finally, I have the treatment. Eribulin itself is only a 5 minute infusion. The anti-emetics and other extras take longer than the active drug - about 20 minutes in total. It seems such an anticlimax after such a long day. Add in an hour or more of travel each way, and the whole day is gone.

I don't know anything about your background,  but if you want to talk to people who are currently having chemo, you could check out the monthly chemo thread. It is always near the top of the discussions list, and people talk about everything chemo related. It's a great source of reassurance, tips, advice and sympathy. And it runs on from month to month, so you can always dip in and out.

Good luck.

Great pic Northerner, feel like that every time I go on this site! You and LondonLass always cheer me up xxx

Couldn’t scroll back Snowys Mum, but commiserate with your computer stress. No wonder you are thinking of jacking it in, but please don’t. You are a wonderful nurse xxxx

, so glad your chemo is going well, your tumours/markers (can’t scroll back) are down and you are still an outpatient! Xxx

moomy I become incandescent with rage over this site, please go on, it makes me feel better. I don’t think admin care!!!

wombat.23 please don’t go. I feel just the same. All the fun, comfort and friendship has been taken away. But on good days we can still communicate. Xxxx

thank you, just waiting for remedy to come in post, need it !!

Hope your f/up appt comes through OK. Hosps are well cued up for covid (sound like Boris Johnson!!)

I miss the like button and being able to see easily who has liked your post

xxxxx

Hi Everyone, Just returned from a few days away -what a nightmare to try and catch up  on everyones posts . the system sends me messages and when I click on them they don't show what it is in answer to!! And I can't go back far enough to see. I realise that I'm an old fogey but the last version felt so friendly and somehow or other this one doesn't . I don't mean you fruit loops personally -it's the site and I don't think Admin want to help make it better ! For some strange reason they refuse to listen to us - is it costing them money if we use it often? Have just sent another comment to them -thanks Grogg for the link. Rant over ,sorry to go on.

I hope in the meantime all those in need of a hug will accept mine and know that the Fruit Loops really do care xxx Kwissy

I’m CERTAIN Admin don’t care! They’ve done this (they say!) as a response to the criticisms they had over the previous fiasco of a site, and therefore are not going to back-track for anyone! I KNOW it’s seen folk leave, several other folk have told me so. I also suspect strongly that folk find it so awkward that, even if they join because they are so upset at getting a diagnosis, they then leave as the site is so awkward! 
all we can do is continue to cite the many problems so that they realise (eventually) that their users HATE this rubbish of a site!

Hugs xxx

I’ve filled in the survey (again!) and also sent an email to community  (it’s @macmillan.org.uk) stating all the stuff I feel about this site. I suspect they will just press ‘delete’ but at least I’ve done my bit  - again!
Hugs xxx