I’m not new to the site but haven’t been very active on it either, but I would just like to say that I’m so glad to be celebrating Valentine’s Day with my husband. When he was diagnosed last April the things I was reading online lead me to believe that he had six to eight months to live. Then I found GRACE and had hope. Things have been going well with him. He is working part time and staying fairly active. So
life is good. And after alll, we’re both in our 70s and a lot of other people our ages have health problems as serious as his.

And GN21 is also here, and finding it difficult to follow new posts. I’m sure I must be missing some. Oh how I miss the Read All Unread Posts Since Last Visit link.

Have had plenty of bad news in the past week with two new light ups showing in my last PET, both apparently in the lung lining and causing a fair bit of discomfort. Plus growth in the other two previously identified tumors. Am now on the roundabout getting all the tests scheduled to try for a new clinical trial which I will hopefully get on and start early March. In the meantime I have had to stop taking my somewhat disloyal friend tarceva. Oh how I miss her fighting spirit.

Great to read all your news everyone and hopefully the tweaking of the Grace site will continue and all will be well.

Gail

Gail, good luck with the tests and getting on the new clinical trial. Hope to hear good news from you soon. Take care.

Thank you Myriam for starting this thread. Follansbee, I’m delighted you are having Valentine’s Day with your husband! Debra, it’s great to hear you’ve got some appetite and energy back. And Gail, I wanted to join everyone in wishing you the best on the trial.
Me, I am in my pyjamas, feeling fuzzy in the head, making nasty reptilian noises, and wishing I had a tub of vanilla ice cream in the freezer. I have been having problems with my breathing, so was in hospital yesterday for a local procedure that I’ve had about ten times since dx: an interventional (as opposed to a diagnostic) bronchoscopy to “debulk” the tumour (which threatens my airway), and, more recently, to clear away the “granulation tissue” that has been growing around the stent in my left bronchus. Debra made me promise to let her know I was OK, which I couldn’t do through the personal messages, so here I am out in the open. I am always well treated in this particular hospital (a “major academic center”, as Dr Weiss would call it), where they have known me since dx, and it’s nice that they can see me in good shape, having seen me in poor shape in the past. The technique they use is called APC (argon plasma coagulation), a form of heat treatment that I think is not much used outside Europe, but which has always worked well for me. So I am hoping to feel much better in a few days. Best to all.

cs, thank you for “coming out” and I hope you’re able to breathe more comfortably now. I’m hoping, too, that you have someone able and willing to fetch ice cream. I know you don’t like talking about yourself.

Follansbee, I’m so happy your husband is feeling so well, and I hope your Valentine is wonderful.

Gail, good luck with getting into the trial. Fingers and toes crossed. Please keep us updated. I’m sorry the scan wasn’t better.

Myriam, I hope your sister finds a trial to participate in.

I’m so glad we’re all together again and hope the rest of the gang shows up as well.

Dr. West, no problem. It was fun learning my way around. Did you get my last PM before the old site got archived?

Debra

• This reply was modified 98 days ago by  double trouble.

Hi everyone,
I just wanted to send a Valentine’s Day greeting to you all. I hope everyone is doing ok, and that good news will be a trend for 2012 and the new GRACE.

Thank you, katiejolove and Dr West!
Debra, I really like your new look. Soon to be seen on the catwalk.
Laya, can you explain what vestibular rehab means? Is this to do with the dizziness your mother has been experiencing? Thank you for the ice cream offer. I will have a shipment from the gelato place that Stephanie favored. My husband has gone off to France, but I have a good friend bringing me yoghurt. I must confess I am feeling rougher than I usually do after a bronch.
I too have been feeling very sad about Stephanie, like lots of people here. One thing I was wondering was whether we could start a new topic that links to her thread on the old site, including the tributes that were left after she died. People wrote so beautifully about her. In fact I might try and do that myself, if no one has any objection. I was thinking there might be people who don’t know yet what has happened, and would like to post something to commemorate her.

I’m nearly half way thru 3rd line of chemo for ext-SCLC. 3rd round is nxt week. I’m repeating carbo/etop, which I did first line. It is all going very smoothly so far. No nausea and minimal tiredness. My WBC count was a bit low after first round, so they reduced the dosage. All fine second round. The pain that I was experiencing from bone mets has reduced significantly and mobility has increased…..until today! Today I am in quite a bit more pain than I have been since I started chemo. Hopefully its just a one off and will be better tomorrow. Since I started chemo, I havent needed any breakthru pain relief, except on chemo days, and today!
Apart from that, all is going positively. I’m looking forward to getting back to travelling again (all being well, I’ll be in the air again in April). My husband and I are thinking of taking a vacation to Europe in June…. we’ll see how everything is going when chemo is finished…. always good to have things to look forward to.

One issue I’m not quite sure how to deal with is community nursing. It was organised for me when I was in hospital to monitor how pain meds are going, and also to keep an eye on how “regular” I am. They are scheduled to come once every 2 weeks. I’m still working full time (mostly from home), and the nurse that I have been allocated just doesnt seem to be able to come at the appointment time (which is a 2 hour window)… she comes late, she doesnt turn up at all, she came at an additional time, and apart from that, I dont feel like she feels very comfortable with me……. so its really not working for me. But I’m not really sure how to raise it with this nurse. I did ring today and spoke to someone else to say that she didnt turn up last week, and to find out when my next appt is. I dont really need someone to come regularly, so I might ask for them just to give me a call on a regular basis, and I’ll call them when I need them…….. any other suggestions?

Thank you, Dr West, I’m so glad to hear that. If you have time, will you post something about the party? I just wrote to Michael and it seemed so strange, writing to someone you’ve never met about someone you’ve never met.
warriorprincess, I have experienced a version of your problem, in that I have often felt completely fraudulent when the specialist cancer nurse has come to visit. We scaled it down by mutual agreement, so that now she’s on the phone, and would come to the house if I asked, but doesn’t come regularly. So I think your “as and when” suggestion is a good one. You might find the community nurse is quite relieved – mine certainly was, as they are very busy and have many patients in a far worse condition than me. But do hang onto the link, as they can be very useful in a crisis, and you might get someone new after a while whom you find more helpful and easier to talk to. I’ve had three different nurses in a year, and the current one suits me the best: very hands-off but there when I need her, and business-like in a crisis.
Hope the pain improves today. And as to that European vacation, as you can imagine I think it an excellent idea