Ted - an update

[Nardobd]

Laura kindly asked how we got on this week, but unfortunately the news wasn't that good.

Ted has ascites - around 7 litres of fluid in his abdomen. He goes into hospital on Wednesday for drainage. Then about 10 days after that he will be starting 3rd line chemo (ie his 3rd lot of sessions). The consultant isn't convinced that the chemo is going to work this time, but we will live in hope.

Ted, as always is in denial - he looks like he is 8 months pregnant but told the consultant he didn't think he had a swollen stomach. Still it helps him cope, so I'm not complaining.

My gut feeling is that this is the beginning of the end. We will just have to wait and see.

Nicki

[rachelqt]

Hi Nicki,

Im so sorry to hear that. I really hope that the chemo can bring Ted some positive results when he gets back to it. You just never know! Im sure its a hard time right now and alot of thoughts and emotions are riding high. My prayers are with you both.

Takecare Rachel x

[CFF]

Hi Nicki,

Sorry to hear about Ted's ascites. I know it's hard not to think it's the 'beginning of the end' but like you say - 'we live in hope'. Try not to spend your days worrying - stay as strong and as positive as you can. I'm sure his denial may be a positive thing for him.

Thinking of you - fingers crossed the chemo does some good.

xxx

[louiepc]

Hi Nicki

I'm sorry to hear about Ted's ascites. I know how hard it is, but try and keep positive, hopefully the next round of chemo will work well.

thinking of you both, my prayers are with you.

louie xxx

[Sam77]

Hi Nicki,

So sorry to hear what Ted is going through. I know how hard it can be having such a swollen belly. I am on my second lot of chemo, as on the first lot 2 new big lesions had grown. I have had so many problems with swelling and most times I look like I am 9 months pregnant and it so so uncomfortable and at times painful. Spmetimes i just wish someone would take a pin to my belly and legs and pop me. My consultant doesn't seem to care but my pain doc is trying to find ways to prevent it..

I really hope both you and Ted get through this and I am sending both of you my support and love

Sam xxx

[laura]

hello nicki,sorry if you felt you had to reply to my enquiry, and you didnt really want to?

you answer to so many people and i wanted you to know that you and your situation had not been forgotten.

about teds denial, i can in some way relate to teds thinking, i am very aware that bri has terminal pc, but all the niggles, aches n pains, and lots of sundry things that bri comments on, i know i pretend to ignore the fact that they "could" be part and parcel of his illness! i deal with things as they come along, cos really i feel quite frightened about the future. Not perhaps ideal but tis the only way i know, can understand perhaps its not helpful for you, maybe, like me, you feel "on your own"?

Anyway enough of me and my "thoughts" i really send lots of positive thoughts your way and for a good outcome.

thanks for replying, love laura xx

[lynbo]

Hi Nicki

Nice to see a post from you but could have been under better circumstances, I'm sure you and Ted will get your fighting spirit once again and battle on.

I know it's hard on you, but keep going you are doing an amazing job

Xxxxx

[mints]

Hi Nicki,

When I first posted on this site, your replies gave me hope.

Ted seemed to defy the odds,which I would imagine gives lots of people hope.

Today I want to send that hope back to you,hoping that Ted continues to defy the odds.

Thinking of you...

Mints x

[Nardobd]

Hi everyone and thank you for all the kind words and support.

Ted somehow keeps going. Only yesterday he was trying to pick stuff up off the floor - he ended up spread-eagled, face-down, on the sofa unable to get up (I will leave the picture of me trying to lift him off the sofa to your imagination, but it was quite, quite funny!). Today he feels a little better, although I'm hoping that after they do the drain on Wednesday he will be a lot more comfortable.

No, Laura, you didn't 'force' me to post...I just had to wait a few days until I'd told our children: obviously I didn't want one of them to search the net and learn the news that way.

Ted and I intend to keep fighting! Whilst there is life there is hope - I keep telling him he only has to survive long enough for a scientist somewhere to shout "eureka!"

Much love to you all

Nicki

[millyjo]

Hi Nicki,

So many times have I been on here checking on everyone and to see whether any breakthrough had been discovered.

You and Ted have been inspirational, so it was with heavy heart I read your post.

I really hope and prayer things will not be as bad as you think.

Thinking of both.

Love Millyjo

[Nardobd]

Thanks Millyjo for your thoughts.

Ted had his drain yesterday - there was the usual mix up at the hospital, resulting in him having to stay much longer than necessary because no one told the nurses he was supposed to have blood tests before the drain was inserted.

Still, it was worthwhile - he is feeling better in himself and able to move around a bit more easily. He's very tired today but hopefully that will wear off over the next few days.

Nicki

[Nardobd]

Despite having the drain last month Ted has another build up of ascites. His legs stayed swollen the whole time between and last night they started weeping - literally the fluid having nowhere to go and oozing through the skin.

His stomach is swelling again and he had an urgent review appointment this afternoon. I spoke to his Clinical Nurse Specialist at 2:00 and he was given an appointment at 3:00 - I certainly can't complain about the service!

Over the last couple of months his food intake has reduced to almost nothing. He proudly proclaimed that he had a good eating day yesterday - 3/4 of one egg, a couple of bakewell tarts and half a small slice of cake! I know that cakes are 'empty' calories without real nutrition but at the moment I'm happy if he decides to eat anything at all. He's lost a good 5 stone in weight - now down to around 9 stone and looks skeletal to me.

I've tried complan and fortijuice - too creamy and too sweet respectively, he says. I even tried a lemon fortijuice and squeezed two raw lemons in it and he still said it was too sweet!

He's sleeping a lot more and having a lot more difficulty getting around and going up and down stairs is something of a nightmare but he won't have a bed downstairs.

He doesn't want the district nurses or macmillan. He doesn't want to be admitted to hospital. I saw one daughter today and had a long conversation with the other on the phone, so they are aware, although Ted himself is in denial and thinks he's going to get better.

As I see it, all I can do is try to honour his wishes and do what I can for him. If anyone has any ideas or input, it will be gratefully received.

Nicki

[lynbo]

Hi Nicki

Sounds like your having a rough time at the minute, I think you have answered your own question though, you are doing a fantastic job, and going with Ted's wishes is all you can do.

I always said that I couldn't imagine what was going through Andy's mind, it must have been torture, so the thinking positive they adopt us how they cope.

Sending you hugs Nicki

Xxxxx

[laura]

hi nick1, i was wondering how you and ted were, so sorry to read your post, re teds food have you tried symingtons desserts, vanilla flavour, very similar to blancmange, i hadnt seen them for a long time, very easy to eat,

you are, and having read your posts, have, coped with very difficult situations, this ones hard isnt it? shame ted doesnt want anyone to come in, could help you as well, cos marie curie and macmillan would be such a support for you as well, and enable ted to remain at home more comfortably, could you put something like that to him? would he agree to it for you?

i do admire you, spect you are fed up being told how strong etc you are? people only see the exterior we want them to, i do wish you well and hope you can sort out something that will suit you all, my thoughts are with you, ted and your family, love laura xx

[millyjo]

Hi Nicki,

Despite realising how poorly Ted is, in so much as he has PC, it was a shock to hear how difficult things have become for you and him.

He has been a stalwart, in so much as his denial has pushed him on, and no doubt given you strength also, but obviously his illness is making things difficult to cope without intervention.

Going from being an independant individual to requiring assistance, was as I recall something mum despised and is a difficult one to overcome. It is unfortunately unavoidable, and also a hard one for carers to accept as well, as it is obviously a sign things are progressing. A body over the strength of the mind battle.

You have been so strong throughout, and am sure what ever you do will be the right thing for you and ted.

I remember trying so desperately trying to find that break through food that mum would eat, trowling around the shops chemists, doctors, online help but ultimately fortisip and ensure was all she could muster.

As for the physical support and climbing stairs, I had two rugby playing brothers who had strength to carry mum, but not ideal as the macmillon nurse told us.

I wish I could offer more constructive help, but all I can offer is my love and support.

Thinking of you, ted and your girls.

love

Millyjo xxx

[louiepc]

Hi Nicki

I am very sorry that Ted has taken a turn for the worse. It is such a hard and difficult time for you all.

With regards the food, to be honest we tried the nutrious with mum, but in the end, she had whatever she fancied, whether its empty calories or not, it was at least something going in. Mum really liked yoghurts, jellies etc. The taste was really nice for her.

As for the ascites, it might be an idea to get a draining booked in advance, at least that way you have a date to aim for, when Ted will be drained. It ended up being every 2-3 weeks that mum got drained. Unfortunately, mum's legs didn't go down, it was explained to us that even though her tummy was drained, the lymph glands in the top of the legs, were restricted, and with the tummy being so big it wasn't possible for the fluid build up to be distributed around her body. The only thing that did help was raising her legs.

My thoughts, prays and love are with you all.

louie xxx