Update

[Ellie]

Hi everyone

Like Clair, I have not been able to get online because my laptop has been in for repair for the last 10 days. I was starting to get withdrawal symptoms, not to mention frustrated, that I couldn't get to my email, online banking and you guys. Anyway, hopefully it's sorted now and I've just had a read through the latest postings.

Nicki - so sorry to hear things are not going well for Ted at the moment. It's a blow, after he was doing so well. I know you will keep fighting and doing your best to get things sorted as much as possible.

Juliana - you must be going through it, not knowing for sure whether it's scar tissue on the scan. It was disheartening to hear that there are no new developments for P.C., but at least for those on Gemcetabine, it was good to hear that it is the best chemo to be having.

Clair - hope Blue is getting help with his lack of sleep.

We've had a busy time lately. Our daughter got engaged 2 weeks ago, which we were thrilled about. We had a family party and I managed to get a lovely cake made within a week, so that was a happy celebration. It was then we had to think about when the wedding would take place. My daughter and her fiance are both teachers, so are limited to taking time off during school hols. She mentioned August, during the summer hols, and it was heartbreaking having to say to her that it could well be too late, if she wanted her Dad to be there to give her away. I felt so awful, making her feel that she now has to rush things "in case" the worst happens. It really would be unbearable if we'd got this far, after all that her dad has been through, for him not to be there on her wedding day. She's now looking at Easter and she's just rang and got me to look online at a few venues she is thinking of booking. She lives in Cornwall and we are in Yorkshire, so a lot of things will be planned on the phone and online, although she's coming up at Xmas and hopefully we can go and look for her dress together

Now for news on Brian. He's been having a very rough time lately. As the weeks have gone by, he's got more and more stressed about having chemo. He used to have a couple of bad days after his trip to the hospital, then he'd be ok. Then he started saying how he felt ill just thinking about having to go there, how he could smell and taste the chemo before he got there, and quite often he felt physically sick too. Juliana - it seems it's a common thing and, like you, Brian has been having chemo almost constantly for a year now. He was feeling so bad, he didn't even want to go out of the house, didn't have any energy, was getting very depressed and wasn't sleeping. Worringly, he starting having more pain in his arm and also stomach pains. We weren't sure if that was the chemo, or the morphine, as he'd been put onto a stronger dose, mainly because he had pain when lying down at night, presumably from his liver. He went back to the hospice last week and broke down in front of the doctor, saying he'd just had enough of it all. He's been incredibly brave and felt so embarrassed about it, but I think it would have to be a very strange person who did not, at some point, want to collapse in a heap. The hospice have prescribed sleeping tablets and something to take at night to stop the constant nausea he was getting every morning too.

Yesterday, he had an appointment with the oncologist at our hospital. After telling her how he felt, and after she had read the notes sent in from the hospice, it was agreed immediately that he would stop having his chemo until the New Year. You could sense his relief and he is happier already, knowing that he will probably be able to enjoy Christmas so much more now. He will have a scan in Jan and then see what happens next.

Yes, I'm worried about what will happen when he doesn't have the chemo, but after all the things I have fought for, all the new treatments I've hoped would come along, I can see that nothing counts more than having some quality of life. It's no good prolonging things if that extra time is spent being miserable and depressed. Brian loves Christmas, so if he can relax and enjoy this one, then that will be great for us both. I really thought I would be panicking more about it, but all that really counts is that he is as relaxed and happy as possible. I couldn't even bring myself to ask the oncologist how this would affect his prognosis. I really do not want to know right now. We will worry about that next year. Is that hiding my head in the sand? I'm sure I will panic even more about the wedding next year, if we find things are not going well, but we'll cross that bridge when we come to it.

For now, I'm just so glad that he is "hospital & chemo free", that the Marie Curie hospice team are looking after his medication needs so well, and that he is feeling so much more brighter.

It's good to be back online and back on the forum. Wishing you all the strength to fight your own particular battle right now and sending you all my best wishes and kindest thoughts.

Love

Ellie

xx

[gillvb1]

Ellie

I am so sorry to read that you and Brian have had such a bad time of it. You are 100% right to put quality of life over everything and make sure that you and your family have a stress free Christmas. Brian is so very brave and good for him for letting his feelings out - I can't imagine how it must feel to have to go for chemo week after week. In hindsight, my family and I would have done things so differently for my Dad and you are doing the sensible thing by focussing on enjoyment and celebration. You are amazing! Love, Gill

[Juliana]

Hi Ellie,

I feel for Brian, he's done so well to tolerate the chemo for a year, not sure I could do that to be honest.....I just about managed 8 cycles without making a run for it. On my last appointment I had the minimum amount of 'flush' post the treatment as I was ready to pull the venflon out myself and make a dash for the door.

That's why I am sooooooo interested in finding something else I can try whether it be along side chemo or instead of. I know my oncologist suggested Turmeric and I found this site:

http://www.agelesscures.com/index.php?main_page=product_reviews_info&products_id=1&reviews_id=35

That seem to offer a good quality product.

I'm also reading alot about Dr Kelley and Dr. Nicholas Gonzalez.....I had reviewed their regime last year after being diagnosed, but of course I went with the tried and tested - you have to. I am revisiting the information now, as I know chemo will not cure me, or prolong my life for a satisfactory amount of time (like 30yrs please!), and I'm not sure whether these regimes but I feel I need to be doing something!

http://www.dr-gonzalez.com/pancreatic.htm

(his case reports seem encouraging, but I guess it doesn't tell you if for every 5 patients it has worked for, there are 500 that it hasn't.....then again, I'm not sure chemo has a better success rate either)

I am sure Brian will pick up again with chemo on hold and Christmas around the corner.

Why not try the Turmeric, it's a powerful anti-inflammatory and immune system booster anyway without the possibilities of it inhibiting cancer cells. It will atleast help build him up after all the chemo, tell him - if he likes - I will go into competion with him over who can eat the most currys in a day.....

Speak to you soon,

Juliana x

[Ellie]

Thanks for your replies, Gill and Juliana.

What a difference a week makes. Brian is 100% better, mentally and physically. He's so much happier, is sleeping better and managed to go shopping for 2 hours on Sunday. The other week, he could only manage to walk around for 30 mins and his legs then felt like jelly.

I think THAT is what quality of life is about....

Gill - how are you doing? So nice to hear from you again. You know what they say about hindsight. I hope you won't torture yourself about what you could have done differently, because I am positive that you did everything you possibly could have at the time and for the right reasons. I hope your pain is easing, month by month, just a little. I'm sure Christmas will be hard for you, so if you need to talk you know we are all here.

Juliana - thanks very much for the info and links on the tumeric. I will have to read up on it all. We do enjoy curries and it made Brian smile when I told him about your offer Keep strong and positive!

Love

Ellie

xx

[Ellie]

Hi everyone

It's been very quiet on here this week. Is everyone ok??

We've just had a brilliant 2 days. Our good friends invited us to celebrate Christmas with them, as one of them has to be at sea working over Xmas. We had the works - tree, lights, dinner, presents and very good company. Brian loved it all and we were up till after 1.30am. Usually, he would have been in bed by 10pm, so it just shows the difference now he's stopped the chemo. I know a change of scenery and company helps, but he ate a full meal, had some wine and joined in the fun, almost as if nothing was wrong.

We visited his family while we were over there too, so all in all it's been a busy, but fun weekend. Just wanted to write something happy and positive for a change!

Hope everyone is doing ok. Keep in touch.

Love

Ellie

xx

[Juliana]

Hi Ellie,

It has been quiet hasn't it...?

You sound like you had a lovely time with your friends and that Brian was able to enjoy it to the full. I'm glad he managed to eat a full meal....I am obsessed with food, how I don't weigh 20st I have no idea! Only problem for me is that I am trying to stick to a cancer fighting diet......sucks! Although if I had the choice between a diet and chemo....I know which one I would pick. I'm currently trying a bit of the Budwig diet. It's Flaxseed Oil mixed with Cottage Cheese....sounds awful - but you can add honey to sweeten, fresh fruit and some crunchy muesli. By the time I have finished making mine it tastes like a healthy style cheesecake for breakfast....can't be bad eh?

Anyway enough about my wierd and wonderful attempts at finding a miracle cure

I'm so happy you have had a lovely few days.....you both needed it.

God bless you both and I hope there are many many MANY more days like those just passed for you in the future.

love -

Juliana x

[gillvb1]

Hi Ellie,

Great to hear you both had such a fabulous Christmas - It sounds as though you and Brian had a really good time! That's the most important thing, that you enjoy life.

In response to your message, the only regret I have is that my Dad is not with us. He was larger than life and the most decent person ever so the way he left us is still so difficult to bear. Last January was his birthday, he was 4 months post whipples and we went out for a family meal. He was the fittest one out of the lot of us and thoroughly enjoyed the evening!

I was stuck on the M6 today behind a road traffic accident and I had a little sob in the car as I remembered the end but I musn't do that - he had a full life and I shouldn't let the nightmare take over the memories of his life. It's the times like that when you least expect to be affected by it all that it can sometimes take over.

My Dad lived for just 9 months with pancreatic cancer (post whipples) and I went into automatic pilot thinking that everything would be okay, that my Dad would be in the lucky 5%, after all, he was fit and brilliant - how cheated I now feel. The hospital staff never warned us that my Dad was never going to get better. I wish I had known that some things would have been his last. Having said that, I know that we must go on and he would be so disappointed if we didn't celebrate occasions as they came. Christmas will be so different but we will celebrate because that is what he would have wanted. I would love to think that my Dad's presence is still with us and if it is then we need to do him proud and continue his legacy of enjoying celebrations and going all out to enjoy occassions as he would have done.

Ellie, you are so much more focussed than I ever was. You and Brian should continue to move forward and enjoy life.

love, Gill

[Nardobd]

Ellie

So pleased you had a good break and that Brian is doing so well.

Nicki

[clair2305]

Hi Ellie

how are you and Brian getting on? I'm glad you had a good early Christmas with your friends.

Best Wishes

Clair