The proverbial bad penny

I went to Ted's appointment with him this afternoon. I wasn't expecting the news to be great and I was right. His CA19-9 has jumped from 70 in January to 438. The next step is a scan to confirm that the tumour is active again (all the signs are screaming "it's baaaccccckkkk" - he's more tired, getting more pain and gets out of breath quicker etc, so the scan isn't really required in my mind). Then more chemo, IF the consultant thinks it's appropriate.

Ted's been in denial for some time. He's not working, so his need to sleep 3 hours plus during the day doesn't actually affect anyone else and he's calling it "normal". He had stomach pains over the weekend but because they're not apparent today he told the oncologist he feels fine.

The last thing I want to do is to take away his fighting spirit. I want to strip away his rose tinted glasses but gently and without leaving him dejected. I just don't know how to do that - too gentle and it feeds his denial, too tough and it will leave him feeling alone, unsupported and negative but there seems to be no middle ground. On the other hand, how do I live with the false positivity? I'm thinking myself round in circles here and never getting anywhere. Like so many before me, I'm asking those questions which have no answers or, if there are answers, perhaps I don't want to hear them.

All that aside, I'd be grateful if you'd send your thoughts and prayers Ted's way.

Nicki

Hi Nicki

I'm sorry to hear that things aren't going so well for Ted. It must be very hard for you right now, but perhaps Ted knows, deep down, that things aren't right but wants to deal with it by denying anything is wrong. Maybe at this point, you need to let him carry on that way until he has the scan results and I imagine the doctors will make him aware of what is going on, and what options he has. I know that won't be easy for you - saying nothing is a lot harder than saying something - whether positive or negative - but at least you will be there for Ted once the doctors update him on the situation.

I probably haven't said anything that will help you one bit, but please know I am thinking about you both and can empathise with your situation. I really hope that things are not as bad as you fear, or the doctors will at least have something they can offer you which will help.

Love

Ellie

xx

Hi Nicki,

Not good news at all.

And I feel for the situation you are in, but also for Ted.....as I can sympathise with him somewhat.

I too think I am in denial, my mind/personality/me/inside feels fine and raring to go - but my body.....that's another matter.

It seems the team that have looked after me from op onwards have come to the conclusion that they may not ever know what is causing all this pain, but they think it must be the cancer - even though they can't see it on the scans. With coming to this conclusion, they are reluctant to do any further investigations of the intrusive type (ercp/laparoscopy etc)....and to just try and make me as 'comfortable' as possible. There were discussions of not even scanning me any more....which I rang up and pointed out that I was advised I would be scanned every 3 months regardless.....so hopefully I will get an MRI this month at some point.

Me as a person, is not ready to die - but I do feel my body is 'moving on' without me - in a direction I do not wish to go.

I hardly slept lastnight, thinking of all the things I should be doing (memory boxes, letters, wills, funeral arrangements etc etc) - so.....I've finally booked an appt to see my solicitor, to get the will sorted. And over the next 2 weeks I will buy the birthday cards for my children, and write them.

It's a sort of resignation I guess.

Then on the other scale of things I am looking at:

Motorhomes

Plots of Land

Houses

Holidays

'Me inside' wants to live so badly....and I have been blaming all this pain on digestion issues, or possible post op intestinal probs.....everything basically other than cancer. So I too am probably guilty of being in denial - but it's the only way I can get through it....maybe it's the same for Ted.

Wait for the scan results and take it from there, I will say though - if the results are unfavourable you may find it hits Ted harder than what you would have expected. When my results were bad last year, it knocked me sideways for over a week .....you never get used to hearing the bad news, never.

Thinking of you both,

Juliana

Thank you all so much for your support. Yes, the right thing is to wait and see what the scans say. It's just that I've been living with this knowledge for a while (albeit not confirmed) and it's difficult.

Anyway, enough about this depressing stuff! How is everyone else getting on?

Nicki

'no comment'......too depressing..........lol

Juliana

p.s. Bloods returned abnormal LFT's - not terrible, but things have changed - and CA19-9 finally above normal continuing on it's inevitable climb upwards.

Oh Juliana

So sorry the news isn't better. Hugs.

Nicki xx

Hi Juliana,

Thanks for showing me the way to this site.

I've been following your posts and have nothing but admiration for the way you cope with all the many things going on around you.

Your a bit of a beacon for me me so you'd better not got out!

This is my first go at a post and I'm doing it to let you know that me and Nat.x are thinking of you and want to wish you continued strength in your struggle.

Ps don't go on a downer because your making a will and seeing solicitors even the the people who think there're healthy do that it's just good sense!

Gordon.

Hi Nicki and I am so sorry to hear about Ted - my thoughts and prayers are with you.

We now at least have Gemma back at home again although she is extremely frail and unable to do much for herself - it is heartbreaking to see her try to move around as this is my beautiful daughter with a 6' model figure dying in front of me and literally fading away. I do understand what you mean about not knowing how much hope to impart - Gem thinks she will be able to build up her strength and maybe have some chemo even though we have been told this is not an option she seems to refuse to believe it.

It is really a case of taking each day as it comes - although sometimes I take things hour by hour as I can never tell how she will be. Her courage and resilience astound me as I am sure we all appreciate when dealing with loved ones affected by this cancer.

Thinking of everyone affected and wishing things could be different but lets cherish the times we have.

Debbie.x

Hi Nicki,

So sorry to here about Ted. I'm sure that his denial has been keeping his fighting spirit alive, so perhaps it best to allow him to carry one that way, then who am I to say whats's best. He is well aware of the situation I'm sure.

All I can say when mum was diagnosed and we were all told the prognosis, it didn't seem real, and subconsciously we all believed the outcome was going to be the miracle that never happens. Even mum, who didn't have the fighting spirit Ted has, believed it wasn't happening. Even up to the point of her last breath we all thought she would fight it. So we as a family were in our own denial, which I suppose kept us going, caring and searching for the ultimate treatment. Even now after 10 months it is hard to believe.

You have been an inspiration and support to everyone, despite your own troubles, and now when you feel things are getting worse for Ted, it is you that needs the support from others.

I know you have many friends on here and I am a relative stranger as I am an infrequent contributor on the posts, but

I regularly come on here to check how everyone is doing in particular Ted, so my heart goes out to you both and my thoughts and prayers are with you.

A hug for you and Ted.

God Bless x

Millyjo

Thank you all for your support and thoughts. I'm going to leave it until we get the results of the scan and, as Debbie said, just take it as it comes - minute by minute if I have to. Your continued thoughts and good wishes for Ted are gratefully welcomed.

Love

Nicki x

Sorry to hijack the article so will keep it short -

Hi Gordon xxx

Glad to see you have decided to post on the site - you won't regret it I promise, there are lots of inspirational beacons here - a great support and sounding board.

Sorry I haven't emailed you in a while - apart from my issues, I've had poorly kiddies with chicken pox and a friend staying for 2 weeks...so busy busy busy. Will msg you shortly, hope you are well and that you are both excited and preparing for your holiday

Dear Debbie,

So glad to hear Gemma is back home....it's truly the best place to be. Ask her GP to prescribe some Ensure shakes to help gain some weight (I've just had an order of 30....chocolate flavour is definately worth a try) - even if she just sips it slowly throughout the day it's added calories to whatever food she is managing at the moment.

Dear Nicki,

Have you had the appointment for the scan yet? I know it's hard waiting *hug*.

I've been told that they are arranging an MRI for me, not sure how long it will take - hopefully within the next 2 weeks, although I think I will ask if they can consider scanning as low down as the pubic bone, to check the lymphs in the groin area etc. My nurse asked if I would reconsider chemo....and offered tablet form instead of infusion, which I am guessing will be Capecitabine. Not sure what to do really as they can't say whether it will offer me any extra time due to how quickly the cancer started forming after the initial dual chemo and radio treatment 2yrs ago.

Anyway - I hope everyone else on here is coping, and managing a smile or chuckle from time to time through all the bloody misery this disease causes.

Night night all,

Juliana

Juliana,

Sorry to hear you haven't had the news you wanted. I'm sure the bad news doesn't ever get harder to hear. You were so helpful, immediately helpful!, when my dad was diagnosed and had the Whipples op before Christmas. He's doing ok and responding okish to the follow up chemo. I think that we're lucky. But I also am so mindful of how horrid pancreatic cancer is.

I don't know how you feel. But I think it's right do plan and write your cards and pack up boxes. But also think about the holidays and home - life without plans and all that....

Thinking of you.

Hi Nicki

been on holiday so only just seen your post. I'm so sorry to hear about Ted's news. I do hope there is something more they can do, whether that be more chemo or another treatment.

What's the latest?

Blue had his CT scan today, hopefully get results Tuesday at clinic....will update my thread about us.

take care

Clair

Hi Clair

Ted had his scan yesterday too. Results in 7-14 days so hopefully we'll know more in a couple of weeks. It's the waiting that's the hardest part.

I'll update everyone as soon as there is something to report.

Nicki x

Hi Nicki

Hope you're not tearing your hair out, waiting for the scan results. It really is the hardest part, isn't it?

Hope you are both ok.

Ellie

x