Hi there ladies. I have been off the air for these last few weeks, so have spent a little time tonight catching up. Hope everyone is getting on with getting on. Last time I posted I was awaiting a PET scan and wondering how on earth I was going to physically get into the car to get to the scan. I managed - wheeled office chair and a lot of ingenuity got me there. Before the results came back, I ended up in hospital with high calcium - 10 days in hospital, and have had this last week at home trying to get rested. Both the high calicum and the PET scan showed extensive spread to the spine, so no real shock, but I had secretely hoped it would be something else entirely. I have recieved one blast of radiotherapy to the upper spine, now waiting for an appointment for the lower half to be done. I want it all done now! But there seems to be a lot of waiting. My onc says we will see how radiotherapy goes and then maybe look at a chemo trial (gem carbo?) I will have to do some research. My pain is being managed better now. I get about with a zimmer frame, and have made a few adjustments at home to manage. take care everyone,
I agree with Pam - I have always found my oncologists secretary very helpful. If you have no joy from this then I would visit the hospital PALS department and complain to them. Whilst nothing to do with cancer I needed to complain to PALS about hospital treatment for my mother in law years ago but they sorted out the problem for me in a day so it is worth trying this route to. Dont give up - we are all here for you.xx
Helen is there anyone you can phone tomorrow who could get something done for asap? That hospital and that nurse need to be sorted!! Yours and other people's lives are at risk because of them.
I haven't been on cap but from what the others have said, it should be easy for them to get you sorted before then. I think they are actually being as difficult as possible with you. That nurse should be you advocate not your enemy for goodness sake. Take your complaints to the board. I'm getting angry now and I'm ever such a calm person really, HONEST.
Love Sheila. Xx😈
Haven't been posting much as my brain can't keep track of the thread but I try to read through. Had a scan after three FEC and the lung mets are 'almost completely resolved with a few tiny ones left in the upper left lobe' so am really pleased. It's the first bit of good news since I was diagnosed in January.
The FEC has caused a slight problem with my heart and blood clotting so am on daily injections of blood thinners (and I'm not very good at it) but minor compared to improvements.
I hope everyone is doing well and Fawlty Towers have pulled their finger out for Helen.
To those who are off on holiday - have a great time!
Those with appointments and scans - good luck and everything crossed.
To everyone - hope you are all doing well. You all brighten my days even if I don't post.
Sorry to hear about your news. My lung mets have remained the same for three years now and I have had two lymph nodes in the lung area which are enlarged but too have not changed in about two years so try to remain positive.
I had fec in 2008. I was nauseus but managed to carry on with most things. I just made sure I went to bed for a couple of hours when I was tired. Pampered myself I did.😊
Just make sure you spoil yourself. I'm sure it will kick butt.
Lots of love. Sheila. Xxx
Hi chocolates, I am actually feeling a bit better today thank God! Still tired but not as bad. Nausea much better. Been chomping on the old ginger biscuits. Don't know if it is them but I do like them.😀 I will wait now to see the onc. The last time I saw my g.p. he seemed to forget that my BC was secondary. I was there because my onc was putting me on anastrozole and he thought my g.p. might want to see how I was doing as I hadn't seen him for a while. He wrote my PX and then asked if I was on these for 5years now?
! I said I was on them for as long as they worked. He looked a bit sheepish then as if he remembered.
Anyway thanks so much for your concern. I will be on with my results on Thursday. It's my birthday so the news had better be good!
Take care. Lots of love Sheila. Xxx
Hi Helen, I'm sorry to hear your news but keep positive! I have read of a lady who was diagnosed with multiple lung and liver mets 9 years ago and is still going strong. How many do we not get to hear about? You must change onc though. That bcn needs a hard talking too as well. She is trying to put the blame on you.
It's because of them you need the holiday more than ever! Stay strong Helen.
Lots of love Sheila. Xxx
Hi chocolates, we must have been posting at the same time! I still feel really tired and nauseous. Its getting me down to be honest. 😣 Still I see the onc on Thur so am hoping he will prescribe something magical. I popped into the doctors on Thursday evening on way for my scan. Asked for appointment but next one was 3rd of September! I can phone up on the morning for emergency appointment but I think I am better off waiting to see onc.
Hope things are OK with you. Will let you know how Thursday goes.
Good luck tomorrow. Will be thinking of you. Hope everyone else is coping. Still feel pretty crap hence not posting much. See my onc Thur for results of scan so we shall see what he has to say.
Still thinking of you all though.
Love Sheila. Xx