lurking on the fringes for 10 months

Hi ,

I haven't posted my own thread as in a way ive been denying this is happening.

Husband was diagnosed with an ampullary duct tumour in October 2013 but it behaves as pancreatic cancer. He had a whipples in November and recovered well. Hes 49. In January he was about to start a trial but they discovered a 4mm mass on liver and his 19,9 marker rose to 1800 from 140 after op. They were not truly convinced what it was and decided to put him on the gemcitabine. His numbers dropped to 1400 and mass stayed the same.

Plan was to stop chemo in the summer and monitor mass. He had put weight on was eating like a horse, exercising, decorating etc

Two weeks ago we were told 4mm mass was now 1cm, there was also another two small masses on the liver and a possible tumour in the original pancreas site.

He is having line fitted and starts the fox on Tuesday.Hes been in a lot of pain the last two weeks and has lost 6 pounds. After 3 visits to the doctor pain is now under control.I think this site is amazing. Ive learnt so much and the nurses are fab !

Hi Jayne,

I am glad you have decided to start your own thread, hope you find it helps, putting things down. Our husbands are the same age, and it's so hard when your future looks very different to how you had always imagined isn't it? Paul has never been 100% since he had his surgery, he hasn't managed to get back to work and can manage little round the house (though slightly suspiciously he could manage to win a family games tournament when we were on holiday!). I imagine it must been even harder for you as you husband recovered well from surgery and then you are taken right down again now. Hopefully where he has had a break since surgery he should tolerate the fox well, and it will do its job.

Do keep us up to date,

Take care,

Nikki

My man is 49 too. Wish that was the only thing they have in common! We will find out on Friday what if any treatment is offered following the return after successful op 9 months ago.

Thinking of you x

I'm also pleased you are posting your own thread also. I think it does you good to get it out.

I am pleased his pain under control. How is his weight now? Is he managing to eat a decent amount?

Keep strong Jayne

Leila xx

Didge- hope everything goes well with the scan

Leila- he had put on way over a stone since the op, lost 6 pounds over the last couple of weeks but is managing to eat again

Nikki- hope Paul is ok

Mcmillan nurse called today she was fab ! Next time he needs a docs appointment shes going to phone them !!!(The hospital had asked on Tuesday, did I need anything and my reply was a McMillan nurse to help with the pain.)

He had his picc line fitted yesterday, I didn't realise he would be going down to theatre to have it fitted, thought they did it in oncology, glad I didn't know that little gem as would have slept even less the night before. Met a wonderful nurse who listened to me-

Trying to keep busy this weekend before the fox starts on Tuesday !

Thanks Jayne, Paul is feeling well this week,seems to have recovered from the double whammy of chemo and a general!

So glad you are getting support, people taking the time to listen and care makes a massive difference to how you feel.

Hope you have a good weekend, and good luck forTuesday,

Nikki

Nitemare day yesterday. Husband got a temperature 37.5 and was advised to take him to a and e as had picc line fitted Thursday. finally after 6 hours in a and e decided it wasn't an infection as bloods were fine and all other obs were fine. Still has pain in his back which morphine isn't touching. Had been constipated for over three weeks but things are finally moving. Hope things settle down soon.

x

Hi Jayne,

Sorry your husband is not feeling too good, I understand exactly about the denial, hope he can get his back pain sorted soon. This horrible devastating disease keep rearing its ugly head, we all seem to be going through the same thing at the moment, re-occurance after surgery, Trevor hasn't had his scan yet, but 19.9 markers are on the rise again, so it looks as though he will be having more treatment. take care sandrax

husband has been up all night with really bad pains in stomach. Its been happening over the last three weeks, every time he eats he feels his stomach go tight. Have mentioned to oncologist, his own doctor twice, doctor at a and e on saturday, was going to take him to a and e an hour ago but has refused. Due to start the fox this morning so hes going to wait for oncology to look at him.

x

Hi Jayne,

Hope it goes well today. Hopefully when the fox starts kicking in all that pain should go, but in the meantime, from experience, get him to have whatever it takes to make him comfortable.tightness across the stomach is something. Paul has frequently complained of,

Best wishes,

Nikki

Hi Jayne, Carl's been keeping me up to date with your news from the chats you two have on facebook and im so sorry you guys are dealing with this. I hope you get to pursue the other treatment options too! Keep on at everyone as they need pushing I'm afraid.

Lots of Love

Rob

x

husband has been admitted to hospital where he had his whipples. Billary tree in liver blocked.Has obstructive jaundice. which has caused infection, temp was 38.00. wee was a funny colour, I saw the sample ! For three weeks we have been back and forward trying to find out what was causing the pain, oncology was amazing. Within half an hr blods had been takne, swabs taken form picc line, urine sample and a doc called fro the ward to examine him, eventually had ultra sound scan and chest and tummy x ray. Im not looking up on the internet what it means, praying they can sort him out.

sorry I had to post quickly as our daughter walked in !Hes still in a lot of pain but ok if he doesn't eat.

thanks Rob- you are so right about have to keep pushing.i mentioned was it possibly a twisted bowel this morning as he had been able to eat until three weeks ago ! He had mentioned to his own doctor on Friday that his urine was the same colour prior to whipples and he said no, its just the oramorph !!!!

x

thanks nikki, hope paul is ok,

didn't start the fox today, bless him when they gave him antibiotics though his picc line this morning he was so unwell he said is that my chemo !

x

Hi Jayne

It sounds as if they have a fairly clear idea of what the problem is which is good. I'm sorry, I don't have experience of a blocked biliary duct myself but I would imagine that resolving that (with a stent?) might sort out the pain and associated issues too. Certainly others who have posted on here with a similar problem with a blockage causing jaundice often tends to be resolved by a stent and then time.

Fingers crossed it is straight forward for you both

Kind regards

Cathy xxx

thanks Cathy, he had a stent fitted before his whipples, he was asked yesterday did he have one and he replied I presume it was removed during the whipples! Hes had a better night with the pain, hes just texted

x

Glad they have got to the bottom of what's going on Jayne, knowing what the problem is can be the tricky bit, hopefully they can sort it out ASAP and he will feel better. Hope you are coping ok, the stress can feel unbearable at times,can't it?

Take care,

Nikki

Tumour causing the blockage, they are either putting a stent in via the liver which is tricky (cant put a stent in via the throat as they did last time) or hes having a drain fitted. He looked so much better yesterday as pain is under control and hes eating. Told me his eating so he doesn't get fed via a tube as the man in the opposite bed has one.

Nikki- You are right about the stress but its amazing where you find the strength from, All you want to do is to protect your family. We have a 9 year old and Im trying to keep everything normal for her. x

Hi Jayne,

Hope today has been ok and he continues to look and feel better. Having a young daughter must be hard, but having her to focus on at times must help. My girls are 14 and 16 and have had to become very independent in the last year. Probably hasn't done them any harm though as I was overprotective before!

Nikki

They have decided to attempt a stent via the liver but it will be tricky as hes had a whipples.

Nikki- our daughter has certainly kept us going, shes been amazing,

Jayne x

Hi Jayne,

That all sounds very stressful, hope it goes ok. I found it very tough when Paul went back to theatre the other week, if they haven't already done it, perhaps think about having someone with you, I didn't and now wish I had,

Best wishes,

Nikki

Still waiting for stent, possibly today or tomorrow

x

I imagine you will be relieved when they have got it done Jayne. Presume he has had to stay in, which must be hard when you have your little girl to worry about too. I will be off line for a couple of days as we are going to Paul's Mum's, but will be thinking of you,

Nikki

Thanks Nikki, hope you have a good couple of days, if stent goes well should be home in a couple of days after that. My little girl is keeping me going. She said last night, daddy's cancer is like a biscuit. The surgeon cut the lump out but he left little crumbs inside.

x

Hello Jayne

What a lovely way for your daughter to look at things. They can bring a smile and a tear to your eye with their outlook. I remember my granddaughter saying that granddad had to die on a special day (he died on Christmas day) as he was a special person. Little comments from the children keep you going. Hope all goes well. take care Lyn