let you all know that I couldn't stay away forever! As I have said time and again, you ALL hold a special place in my heart and I am glad to be here with my second family!
I look forward to catching up with my reading and with all of you in the coming days.
Cancer Dad glad to see you back! In two days I go for my colonoscopy to find out why I have on and off rectal bleeding. I will let you know what I find out. In the mean time God Bless You and everyone on here.
Glad to see you back. Hope all is well.
Husband has check up with colon surgeon at end of month. Dont expect anything more than a prod and a poke with a big stick . Husband has really slowed down this past 2 months and has only just started going back to the gym for very short work outs. He also has a wonky knee which bothers him. I keep reminding him that he is just getting a wee bit older and its not necessarily connected to the cancer but he does get a bit down sometimes.
I keep reminding myself that he is a stage 4 survivor; 3 years and 5 months since diagnosis and still alive and kicking even with a wonky knee.
Cancer Dad, I am so glad you are back...it was not the same without you!
Ktee, it is good to hear from you. I hope the appointment goes well...your husband is such a miracle and an inspiration to others on this board. I am sure he must get down from time to time and it is good you are so understanding and supportive.
Love and prayers,
__________________
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.
Ktee:
Good luck with DH. I hope they don't use too big a stick! Maybe for comfort he could request a pediatric scope be used. The GI or colorectal surgeon needs to know how to use one as it provides a smaller image than the regular scope, so it takes a little more looking, but is more comfortable. Otherwise if your DH is going to get a good drugging, maybe just let him get the prod from the "bigger scope."
Also, please remind him that "After-effects" of cancer are just now coming into focus as we advanced cancer survivors are now living through it more and more, and even most oncologists don't know why or what to expect. I don't know whether you get Cure Magazine in the UK, but they did a great job talking about the "After Effects" and bring to light the fact that survivors can experience pain/fatigue/lethargy, etc. even years post treatment.
So, it may not just be his aging, it very well may be some "after effect." The Special Fall Edition of Cure Magazine can probably be reviewed on their website. And what makes this phenomenon so real is number one, because I suffer from it-- or at least experts tell me I do! And two, the article follows a physician survivor and her experience several years post cancer.
There ARE medications to help, if this is what his problem is, and whether his oncologist is up on this new data and willing to help... if not, maybe finding a physiatrist or even specialist in cancer pain management--both specialties seem to know more about this phenomenon than an average oncologist.
Best of luck and good to hear from you too!!!!
Fondly,
CancerDad
Well CDad.....the good old NHS here in UK do not exactly give you that many options but it will be interesting to see the look on surgeons face when i ask him Husband is not worried about the procedure as it is water off a ducks back i guess but he just gets down about the whole "im not like i used to be" thing.
You are right about the growing awareness for survivors. I think we are slower here in UK and probably need to do some catching up. However there are some area health authories that are coming up with different ways at assessing how to give continuous care to survivors. There is a tendancy to give a big cheer once you reach the 5 year mark (and rightly so) but then thats it..... you are on your own and the monitoring stops right there.
I think that if you can find the right person to talk to about improving aftercare then they will do all they can to help. For example, after husbands last liver scan he was off his feet for a couple of days, probably because he had to starve himself and then started eating normally again. I searched out the Oncology Quality Assurance Manager for our network of cancer care hospitals to explain how the starving prior to scanning affects him and now she and her team are going to bring out some new guidelines for patients to send out with their appointment notes.
Having a patient advocate to help a sufferer through the illness is a brilliant idea.
Having a survivor advocate is also a good idea to help overcome the many side effects you are left with.
Jeni and ALL:
I am VERY glad to be back. I missed all of you too. Jenni-- how are things in your camp?
Fondly,
CancerDad
PS Smeggle-- I'm afraid people like your husband and I might just have these problems, possibly forever. As Ktee suggests, there is going to need to be some protocol set up for Survivors, in the UK and here. In the mean time, those of us who suffer from "After-Effects" need to find a competent, compassionate physician who cares and helps your husband, and me, through whatever may pop up providing adequate releif from pain, fatigue, etc. I wish your husband the best of luck.
Cancer Dad, I am doing well, recovering from radiation/chemo, last zap was
on Monday. I am having more of the burning/tenderness, it increased over the weekend but is not getting worse, and I am glad it just came at the very end.
Got the mouth sores again, from the last chunk of the "bookended" ( first and final weeks only) chemo, this time, fewer sores, shorter duration, plus I had that great oral paste from my dr, it really nips it in the bud. It has a steroid in it, and you smear a thin film on the sore spots. If anyone wants the name of it, let me know, and talk to your doc about it.
So right now I am just dealing with all kinds of presurgery fears, like, as I am sure you can tell from my posts, do we remove other organs pre-emptively even if they appear fine ?
Also - maybe you can help me with this - what does it mean when you say "live" cancer in nodes ? I seem to remember you posting that after your neoadjuvant care, you still had "live" nodes at surgery. And I have heard other talk about finding evidence of cancer in nodes but the cancer being "dead." What does this mean, exactly ?
Sorry to sound so feeble, but there is just a lot I don't know.
There really isn't a way to thank you for all you do, for all of us, other than to just let you know how much it means to us.
My surgery is scheduled for 6 weeks from the last zap -- that isn't too long, is it ? I know that 4 - 6 weeks is normal, I just need someone to tell me that, and yes, I have left a neurotic message for my oncologist asking him about this.
I must cast my vote for CDaddy as the GrandDaddy of everyone here who has ever benefitted from his kindness, his empathy, and let's not forget all that knowledge he has & willingly shares.
CDad, I wish more than anyone that you would have had no reason to know all that you do - but hold you in the highest esteem along with (men like John Walsh) those who take someone bad that has happened to them and make something wonderful and of value, saving other people's lives in the process.
Remember folks that there are good people in the world - and don't ever forget the words that CDad has & will continue to share with all of us:
CD- It's nice to see you back on here.
Hubby's last day of chemo/radiation was this past fri. Waiting for surgery now. So how the heck are you? Long time no chat. I'm hanging in there, it's been rough though....I'm gonna be a pretty darn strong chic when this is over with.
Maybe now that your back now, I'll check in more often. Everyone is so wonderful here....but honestly, it just wasn't the same without you.
Also - maybe you can help me with this - what does it mean when you say "live" cancer in nodes ? I seem to remember you posting that after your neoadjuvant care, you still had "live" nodes at surgery. And I have heard other talk about finding evidence of cancer in nodes but the cancer being "dead." What does this mean, exactly ?
Sorry to sound so feeble, but there is just a lot I don't know.
There really isn't a way to thank you for all you do, for all of us, other than to just let you know how much it means to us.
jeni
Jeni:
I just mean that there were positive nodes for active cancer (meaning cells that did NOT die during the aggressive chemoradiation.) You do NOT sound feeble at all. EVERYTHING you are going through is PERFECTLY normal. I posted on another thread for you.
~CD
Re: I just wanted to post to... 
. Husband has really slowed down this past 2 months and has only just started going back to the gym for very short work outs. He also has a wonky knee which bothers him. I keep reminding him that he is just getting a wee bit older and its not necessarily connected to the cancer but he does get a bit down sometimes. 
