Devastated wife

Hi QBee and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm so sorry to read about your husband and I do understand what a difficult time this must be for you both.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

Sending lots of virtual (((hugs)))

Thank you

This is the first time I have looked at any contributions on this site.  I did a search for cholangiocarcinoma as that is what my partner had and I found your post.  I am sorry to hear about your and your husband's situation which is inevitably difficult and distressing for you both.  It is a vicious and merciless cancer - usually discovered too late for effective treatment and some people suffer greatly.

My lovely partner of 27 years was playing golf in France all over the xmas period and the only symptom that he had, looking back, was that twice he did not eat a starter at 4-course meals and said he didn't feel like it.  This was unusual but as it happened only twice it was not alarming.

We were back in London for a fortnight and after a week he started going back to bed in the morning to sleep as well as his usual afternoon siesta.  This was another symptom that we did not dwell on at the time and we had no idea that our shared and individual lives would soon change forever.

Then he had a couple of days of abdominal aching and dark urine so had a blood test at the GP.  The results led to an ultrasound at UCLH the next day.  He left the house looking well and told me and neighbours that he would be back later in the afternoon.

Once in the hospital his bile duct became severely blocked; he became jaundiced and had a stent put in the bile duct and antibiotics for infection.   He had an MRI and PET scan, a  biopsy on a mass in his bile duct and another on a liver abscess.  Everything happened so fast.  After a week was sent home with a potential cancer diagnosis which was confirmed around 10 days later and was not viable for surgery.

He had hoped to become sufficiently fit for chemotherapy and immunotherapy but he never did.  Every activity exhausted him for hours afterwards and eventually for days afterwards.  He ate less and less and became weaker by the day.  He lived for 7 weeks and half a day following his diagnosis.

Fortunately he was never in great pain or discomfort and during the last 3 weeks he slept for around 23 hours a day.  I looked after him entirely until the last 15 hours of his life when he insisted to go to the hospice having refused to go there previously.  He died 2 weeks after his 78^th birthday but I don’t think he was aware that it was his birthday.

I am now 4.5 months post-bereavement; I miss him many times throughout every day and it is hard to think of a distant future right now but I am grateful he did not suffer much and his dignity was maintained throughout his brief illness.  He was such a sweet-natured man and he made it very easy for me to care for him when he was so very vulnerable and could do nothing for himself.

Nothing can prepare us for the sudden and massive devastation that this disease brings.  The speed with which it can move is truly shocking and is impossible to imagine in advance.  It renders a person helpless and fragile and it is a hard journey to accompany.

My partner had no energy to help me so I had to learn to accept the help that was offered to me from elsewhere for myself.  I am grateful that there are some wonderful people around who care about others very much including neighbours who I had never met before.

I hope you are as okay as it is possible to be under your very difficult circumstances.  I hope that you have the support that you need and can find small ways of caring for yourself as well.

Morning Christine,

Thank you so much for your response.  I am so sorry for your loss.

This particular cancer is so incredibly brutal.

 Darren has been home for 4 weeks now.  Another stent was fitted in the bile duct, before he left hospital, as the tumor crushed the original one .
 He spends a large part Of the day in bed as everything  exhausts him.  However, he is managing to work from his bed.  He has his own business and although he has handed a lot of the daily running g over to staff there are still things he wants to do himself.

he has now developed Ascites and is awaiting to have fluid drained from his abdomen.  He had the procedure 2 weeks ago and they managed to get 6 litres of fluid.  Unfortunately, it has returned very quickly.  Apparently, this procedure can be done 3 times and then he will have to have some sort of port fitted so we can do it at home.

I hope that you are managing ok.  I have days where I can’t imagine how life will look after and how you manage to live with the grief.  I know people say that it gets easier, does it?

I find it overwhelming at times, trying to navigate Darren’s needs and care, trying to remain strong  for the children and financial responsibilities, 

Sending you love and peace x