Hi [@JaniceMe]‍ , I'm so sorry you got such a cruel diagnosis. I think you are very brave and totally right to be making your own decisions about when treatment is or isn't worth it. 

I got my choliangocarcinoma with liver and node spread diagnosis on April Fools Day this year. Similarly to you I've been told, on average, life expectancy 6 months without treatment or 12 months with treatment. Again like you I feel I've accepted my diagnosis. I have treatment decisions to make now and it's tough weighing up what may or may not be worth it.
 

Am sending you strength and my admiration. It's your life and you're entitled to live it on your own terms, especially in such difficult circumstances.  
 

LL xx

Hi [@JaniceMe]‍  and [@L0nd0nlady]‍ , Really sorry about your news. Really awful. You both sound like very strong women. Wishing you both the very best. Harry

Thank you Harry

Hi Janice Me

I was given a similar prognosis in March and have had one round of chemo, my last one was postponed as my neutrophils were really low. I am hoping that I will be having it this week. I initially felt as you do and would have refused chemo had my son not been with me when I was told that without it I had weeks, with it maybe 1 year. Within days of my first chemo I was able to swallow again, my pain decreased so much that I only need a morphine patch and occasional other pain relief, though it has increased again this last week.  I am not ready to die and I will explore every option looking for someone who can potentially offer me more hope. That said, I totally understand your decision and also your feeling of sadness as that is exactly my feeling. 

I am here if you want to talk and sending you a huge hug.

Ly xx

Hi so sorry to hear we are both battling something that is such a aggressive cancer yet so silent until we get a few symptoms. What made you go to the doctors? I had a sore throat a couple of months an Xmas day was the last straw as couldn't get my dinner down! Spent ages cooking for the family and to be honest everything does revolve around sitting down with friends or family. Just started cooking cakes during lockdown but can't enjoy them myself. Are you able to eat now without pain?  I haven't had any morphine yet. Stay strong too xx

Thank you Harry. We are not strong but sometimes it's easier to accept things as it is what it is and I do think having my daughters so supportive has helped. One did say yesterday "poor mum your mind is so tough but we are realising your body isn't." Reason said this I am sat in bed feeling nauseous an as it's been some days now that I have been sick debating whether it's time to call hospital an go on a drip. X

Hi finished radiotherapy 2 weeks ago an got side effects day after. Very painful in area of tumour but vomiting was worst an despite nurses giving me injections ended up late at night at hospital on drip. No bed available so very uncomfortable 4 hrs but was able to go home early hours. Felt so much better as had fluids an strong anti sickness put intravenous. Am able to eat more now but throat still painful hence why I am up at 4.30 am writing this. Have had some good days but it's the breathlessness an fatigue that gets me as all geared up to go out to shops or friends then after half an hour feel knackered but again getting more energy each day. Daughter gave me PEP talk about being open to maybe a 3 month break from treatment as mini breaks arranged each month as treats an my 65th Birthday in June an see what alternatives Consultant can offer without so many side effects perhaps even going on a drip straight after treatment as 3 times now I have needed drip. So have promised her I will listen to what is available. Do need stronger pain relief so will be calling doctor. Have Consultant ringing me on 18th May with results from radiotherapy so hope it has strunk. I am not a very tolerant person normally but have come to realise I am stronger than I knew. So keep strong out there x

Hi Janice, I hope you managed to get some sleep after your early-morning post.

What made me go to the doctor's was discomfort under my ribs on the right hand side. My GP arranged an ultrasound to look for gallstones and although they did find a gallstone they also found abnormalities in my liver. It took quite a while to get a diagnosis because they had to find out if it was cancer of the bile ducts in the liver or cancer of the liver. They're sure now it is bile duct cancer (cholangiocarcinoma). 
 

Eating is not painful but my appetite has really shrunk. I've been taking morphine (slow release and oramorph) for several weeks now as the discomfort progressed quickly to pain.

I've got my first Gem/Cis chemo session tomorrow. I can't believe how much my life has changed in such a short time. I can only hope that, like you, I will discover previously unknown reserves of strength! Thanks for lighting the way a bit for me. It does help to know that I'm not alone in this even if our cancers are different.

Rachel

Hi hope Chemo goes not too bad.yes our lives have changed so drastically in such a short time and do not think any of us could ever be prepared for the changes we face in both mental and physical changes. I tried to get morphine patch yesterday but waited all day for a call back but no joy so will try again today. I do feel whirlwind of appointments an support (almost overwhelming for me) but then any follow up I have had to do.,I do understand that departments are busy but it appears we are unprepared for some of the side effects an pain we find ourselves getting. We are told not everyone gets this or that but most people I have talked with do get them but I don't think we get the support from the medical staff doctors etc to deal with them particularly with myself the vomiting and nausea which has meant 3 trips to hospital on a drip which afterwards I felt so much better physically and mentally more able to cope. I really think the strength of cancer patients is amazing but I do feel we all need better follow up to make sure we are coping with our pain or worries. Sending huge hugs to everyone out there