New diagnosis

Hi Martin D,

That’s an awful experience & can’t fill you with much confidence.  I’m just wondering if you being treated at a specialist hospital?  If not, you can ask for a referral & second opinion.  I would recommend looking at the AMMF website which specialises in bile duct cancer.  I hope you can soon be seen & AMMF can advise on what specific questions to ask. 

Do keep us posted, this forum offers lots of support.  

Hi Martin 

Sorry to hear about your recent diagnosis, there is hope I am proof of that, I'm sorry it was such a shambles how the news was broken to you, there is no bed side manners anymore, just direct blunders in your face.

They will do what's best for you and will they offer you surgery? Hope they can resect it all and give you chemo afterwards to mop up - keep me posted and I had surgery 4 years ago & I'm still living a full life.

Take care & keep positive 

Xx

Thanks so much. I'm seeeing a consultant on Monday. who will hopefully tell me what.  stage the cancer is and the treatment plan. This is happening at King's College Hospital. I'm in East Sussex and had all my CT scans &. MRI's at Tunbridge Wells & Maidstone.

Thanks so much. I'm seeing a consultant on Monday at King's College Hospital for the first time.

Hi Martin

Glad that you are seeing a consultant Monday and they can go through the treatment plan with you. & You will be more enlightened as to what you're dealing with. Fingers crossed for you.

I had a lot of different scans when my cancer showed up, I had ultrasound, CT, MRI & pet scan. But none of them were really conclusive until I was operated on and they biopsied, I did have real bad jaundice before the op, they had to stent me to relieve the jaundice before they could remove the cancer.

I have another CT scan on Tuesday as I've had an elevated tumour marker blood test - and a few abdominal pains - so just to be on safe side they're checking it out, hopefully it will be nothing to worry about but it's always there in the back of my mind

Take care 

Yes,  that's what. I'm hoping for. It will be the first time I've seen a Dr/Consultant. 

I've also had the PET scan & in fact they've booked me in for a contrast CT scan in a weeks time,  I must.  be radioactive by now!!!

Hi Martin,

It's good you are going to a large hospital that will have more experience in this cancer.  And finally seeing someone too.  My husband who was 76 last September (77 now) recovered very well after a resection.  His biopsy did confirm Cholangiocarcinoma, lots of different scans & ultrasounds followed, I am sure you will be in good hands now.

It is a worrying time.  Keeping everything crossed for you, do keep us posted.

Do you have any tips on getting to sleep? I'm often awake until 2:00 or later. Then, I take a Zopiclone and knocked out until noon or later. Luckily, I'm retired.

Hopefully, after I've seen the consultant, tomorrow I'll have a better idea of what I'm dealing with.

Hi Martin 

My sleep isn't affected, but i have had zoplicone before when I had issues with sleeping and it didn't work for me.

I find if I wake up and can't get back to sleep I go downstairs and make a milky Horlicks and sit and write all my worries down on paper & then they're out of my head then I throw the paper away in the dustbin and try to reset my brain a bit. I find worst time is in the morning for me, but when I have my scan on Tues I will treat it as a turning point and will stop these unhelpful thoughts I've been having from bullying me! 

I also find a nice bubble bath and reading a book helps relax me and I usually can't wait to get to bed for a break from myself, I also work full time & I throw myself into my work, which is very fast paced and it's a nice distraction - I easily fold into myself given half the chance and have to be very self aware of all the triggers that can send me over the edge.

Hope this helps you & good luck for tomorrow let me know how you get on 

Xx

Hi Martin D & JWing,

As a wife of someone effected by this disease I can only try to imagine what's it's like to be in both your shoes, the unknown is the worse.  I agree Jwing, great advice, sometimes you just have to give in & get up, and make a warm drink.  I'm not a great sleeper at the best of times, my son bought me an early mothers day present of a 'drowsy' sleep mask.  For the past week it has been a game changer although a bit of a shock when you take it off in the morning!  There's no gentle wake-up.  They aren't cheapest but extremely comfortable to wear all night.  

I hope you both soon have your results, and have someone close to support you.  Sending well wishes & take care of yourselves