Ted - an update

Ted continues his chemo again tomorrow having had a couple of one week breaks recently due to a recurring chest infection. His CA19-9 is now down to 49 - hard to believe that it was 1200 just a few months ago!

His side effects from chemo have been more severe during this second-line treatment but nowhere near as bad as some people suffer. He gets shortness of breath, ssevere fatigue, slight digestive problems and a rash/burning sensation in his hands/lower arms. He bears it with his usual grace and dignity.

Waiting around in the hospital continues to be a bugbear - Ted's appointment to see the consultant was at 3:00 pm this afternoon and he was seen just before 5:00 pm. He goes back tomorrow for his chemo and says that he's going to "give them merry hell" if the treatment isn't ready!

However, and it is a big however, he continues to have a good quality of life with (as far as we know) no spread and the CA19-9 and his scan a couple of months ago indicate that the gemcitabine is again doing the trick. We're very fortunate to be in this position some 20 months after diagnosis. I'm well aware that many who will read this message haven't been so lucky and my thoughts and prayers go out to you all.

Love

Nicki

Hi Nicki,

I am new to the forum and not familiar with Ted's situation but I know quite a lot about Pancreatic Cancer as I sadly lost my mother to the disease last year and support PCUK as much as I can.

I think it is really great news about Ted, it is good to hear that he continues to have a good quality of life and his CA19-9 is at a lower level. I really hope it gives other people out there some hope and it's really nice to see someone on the forum with some positive news.

I know it must be a really hard time for you at the moment, keep your chin up. He is very lucky to have you taking care of him

Lucy x

Glad to hear Ted is doing well and his CA marker is down. i hope you are keeping well Nicki.

I have been looking to see if there are any fundraising does on around Manchester next week.

love pamx

Thanks Lucy and Pam

I'm sorry to hear that you lost your Mum, Lucy but it's great to hear that you continue to support PCUK. Pam, it's good to hear from you again and I'm good thanks.

I'm always a little reluctant to post our positive news because I know that there are some people using the forum who are having really tough times. However, it's important that people who read the forum get a balanced view and know that it's possible to beat the odds!

I was lucky enough to attend the Parliamentary launch of the Study for Survival this week (www.pancreaticcancer.org.uk/campaign_study.htm) and had the privilege of meeting Glyn from the Channel Islands who started out with an inoperable pancreatic tumour but after chemotherapy was able to have the Whipples and is now recovered. I find stories like that incredibly inspiring.

Anyway, this started out as just a short note to say thanks for posting so I'll stop rambling.

Thanks again and much love

Nicki x

Hi Nikki

I was going to go to London to the launch, but I had no-one to go with, and London is a bit of a scary place when your alone and vunerable. I would love to know how it went? and are they doing anything similar soon? or anywhere different?

I am busy doing raffle tickets, coffee mornings and fundraising all for pancreatic cancer next week. Got over £300 already !!!

xxxxxxxxxxxxxxx

Hi Nicki

So glad to hear the good news! You shouldn't worry about posting it - like you said, there has to be something positive on here, or we may as welll all just give up now!

This time last year, I thought I would be sharing my last Christmas with Brian and couldn't even bear to celebrate the New Year at all. I wish we had - we've had another wonderful year together and hopefully things will still be ok for us over the Xmas period. I'm certainly planning a lovely party for Brian's 60th on 29th December anyway!

Carrying on Regardless!!

Love

Ellie

xx

Hi Nicki

so pleased to hear the good news on Ted as you said about time we had some good news for a change........ lets hope this carries on

Ellie so pleased for you too the both of you gave me such strength through my troubled time last year

I hope and pray this good news carries on

All my love to you

Pauline XXXX

Ted went to see his consultant today prior to chemo tomorrow. As I mentioned, he's had a few chest problems recently and the consultant has decided that he's generally not healthy enough to make it worthwhile continuing the chemo at this time.

We're not being abandoned - Ted is going to have a scan in January and see the consultant again after that. Right now, though, that seems a long way off and I'm feeling pretty desolate. Of course, I appreciate that there always has to be a balance between the pros and cons but it's a bit of a shock. I keep telling myself it's just a little setback - let's hope that's not just wishful thinking.

How is everyone else doing?

Nicki

Hi Nicki,

I am sorry to hear Ted as got to take a break from chemo.It is important he becomes strong again.Just try and enjoy the extra time you both have together,where he would have been having chemo.

I am trying to think of my nephews at xmas and spend time with my family,which i know is going to be hard to do without my dad.Am still struggling to come to terms with it all.

pam

Hi Nicki, I'm sorry to hear Ted has to have a break from chemo, but maybe he will start to feel stronger soon and then he can go all guns blazing in january. I hope so. Well I am off to visit my sister tomorow, long journey so I will stay a couple of days, really hope and pray I will hear something positive. Take care of yourself and Ted. Will be thinking of you. Marie x

Hi Nicki,

Sorry to hear about the chemo break although if I were you, I would take this break to really push for the chest infection clear up. Take a leaf from my book, I approached them atleast 4 months ago with concerns of pneumonia....and was fobbed off as 'well you do have multiple tumors in both lungs......this is normal'.

Now upon my MRI my lung tissue is severely damaged due to untreated infections.....go figure.

I asked to be examined for Ascites, also back in September as I'd noticed a change in my abdomen shape and was feeling very uncomfortable. A couple of prods here and there, and it was determined I had nothing to worry about. No ultra-sound scan, nothing. An ultra sound could have also detected problems with my portal vein, maybe I could have gone on clexane much earlier and minimised the damage to my liver and spleen.

I guess my concerns are not important enough to act upon.

And yes, I am bloody well cross.

It absolutely sucks, after all these years of me proving them wrong, you'd think they would just give me the benefit of the doubt and run some extra tests....out of sheer curiosity if nothing else!

Personally, trust in what Ted describes, and keep nagging for action relating to it.

Thinking of you,

Juliana x

Thanks guys

Just so that Ted isn't getting all the attention, I've joined him in the chest infection - we can cough any tune between us so any requests?!

You're right Juliana - we have to get the chest infection cleared up and hopefully Ted will be able to continue with any further chemo he needs next year.

You've got to learn how to throw your toys out of the pram, lady. Whenever I thnk Ted needs something I won't take "no" as an answer. I was really sorry to hear that you've suffered so much just because the medics wouldn't listen to you, and you're constantly in my thoughts.

Good to hear from you again Pam. Christmas will be hard, I know, but I'm sure your Dad will be right there with you in spirit.

Love

Nicki x