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Rollercoaster

6 REPLIES 6
Kay0987
Member

Re: Rollercoaster

I don't know. I expect it'll change if you all can't afford it. The biggest difference I can see is here we have more say so in our treatment from start to finish. And shorter wait times on non-essentials like reconstruction. You all seem to do that a lot at the same time with mastectomies. That's still uncommon here but I imagine that happens because if you don't do it immediately it could be a few years of waiting. I won't have to worry about that. But our co-pays are expensive as are our out of pocket expenses and deductables. And that's with good insurance. 

saraha59
Member

Re: Rollercoaster

Thanks for your reply Kay

I’m glad you have had a positive response in your part of US. 
I am very grateful to have an NHS and free health care from the point of delivery…… just how long before we too have to rely on insurance plans too?

take care

Sarah x

Kay0987
Member

Re: Rollercoaster

I'm from the US so I wouldn't know. Thus far though I've had a good experience with responsive doctors, excellent wait times, and superb care after surgery. But here it depends on where you're located and what insurance you have. Experiences can greatly differ. 

I do think that worldwide though covid has wreaked havoc on our medical systems with short staffed hospitals being common either because of an influx of patients or lack of normal staff. I'm so sorry about your experience and I hope it's an isolated one.

saraha59
Member

Re: Rollercoaster

Hi Kay

thanks for your reply

the individual Drs & Nurses I can’t fault it’s the system that seems to have fallen apart….

I had to go onto the assessment unit last week at 7.30pm and no one was there to receive me so after 1 1/2 hours of waiting outside I went on to the ward and told a nurse she apologised but then left me in a cubicle for 2 hours with out any Obs( my temp over 38)then a Dr briefly talked to me and disappeared. Finally they took bloods which were sent to the lab and took ? 5 hours( fast track) to come back. I was sleeping in a recliner and luckily a kind nurse had offered me a hot drink and sandwich later on…

at 4.30am I was told I could stay on he ward in a bed until morning if I wanted. 
I ended up getting a taxi at 4.45am with cellulitis ( not very safe for a woman alone).

whole experience puts me off contacting the hospital again if I have a temperature…. 
the staff were lovely but it was all very chaotic. That night I had no family  members available to take me home at that time …

has anyone else had a similar experience of a chaotic hospital situation…. Can’t remember it being like this 13 years ago

i guess the NHS is under dreadful pressure and stress…

nice to have all your support xxxx

Sarah

Kay0987
Member

Re: Rollercoaster

I think everybody would probably want to tell you here to never think you come off as weirdly desperate. It's breast cancer. It makes all of us desperate at some points. I'm so sorry though you've had a recurrence. I do know that in the 13 years since you've had it quite a few new treatments for it have come out. I hope your experience with your doctors improve quickly so that you find peace as you work to maintain your body. 

saraha59
Member

Re: Rollercoaster

Thank you Anita for your reply and suggestion

i hope I didn’t come across as too desperate as weirdly I have some very positive days too despite the ‘rollercoaster’ and the upside is I think I am so much better at self care and love than I ever was and also appreciating the love of others around me…….definitely some of life’s gifts that one can appreciate often in times of turmoil. I guess this is a process that we are all coming to terms with and learning to live with…… hard…. Especially as the wheels keep turning and people around us carry on normally…

thanks for reaching out

sarah x

saraha59
Member

Rollercoaster

Hi my name is Sarah

new to the forum

i was diagnosed 13 yrs ago with her2 + breast cancer stage 3 mastectomy radiotherapy herceptin diep reconstruction( gosh what a lot we all go through!) somehow I got back on the horse with children at home and a return to work and apart from lymphodema which was hard to adjust to, put cancer behind me pretty much……. Then wam…….I took myself to breast care centre as I was struggling to move with a painful sternum…. It was initially dismissed as costocondritis but I persisted and an X-ray then biopsy confirmed mets…

what a blow….. since then my feelings are all over the place…. Sometimes numb and detached other times very emotional and thoughts Of terminal and funeral etc

it seems so difficult to get a balanced perspective on things when there is so much uncertainty.

luckily I have a 2 year old grand daughter that I care for a lot and she forces me to live in the moment…

I have found my secondary diagnosis much harder to cope with partly my NHS experience has been pretty poor this time which doesn’t feel containing..

Hope my share is useful to others

good to talk openly to peeps who are going through similar 

Sarah xxx