Having a permanent drain fitted

My father is stage 4 and cancer is in his liver and stomach. A few weeks ago he became jaundice and we were aware this had happened because the cancer in his liver / tumour had created a blockage. The GP explained we are in the end of life stages. 

Dad was diagnosed with bile duct cancer 18 months ago. We took the decision to go ahead with the Wipple procedure operation unfortunately the margin was very thin so it was followed by 8 months of chemo drugs every 2 weeks he took orally and after the chemo he had 3 weeks of radiotherapy. He became very unwell post treatment with fever and infections and when we were able to go back to the hospital we were told by the oncologist that he was too weak to have further chemo treatment and the prognosis was a few short minutes months. We left the hospital and came home to digest the news and as a family supported dad and all agreed it was more about the time he had left and his quality of life. 

what I wasn’t prepared for was the recent symptoms of his stomach filling up with fluid and it’s now his legs and feet. 

Although we agreed no more treatment we spoke to the GP and agreed if there were other things such as chest infection or things we could do to keep him comfortable and free of pain we would but no more in and out of hospitals with CT scans and MRI and countless bloods. 

this is all new to me and despite looking up symptoms for liver cancer just wanted to get some feedback on what to expect and how best to manage a permanent drain as also worried about infection and it coming out. 

I managed his post op drain at home but that wasn’t for long as fluid stopped after a week. 

I know we are coming close to the end and struggling a little as don’t want him to go he’s our world and such a fighter. He was told in Feb a few short months and he was doing well up until a month ago. 

I also wanted to ask can he have breakfast in the morning before his drain is fitted? They are picking him up at 10.am by ambulance as he’s too uncomfortable and weak for us to sit him in a car for the journey. 

many thanks  

Kat 

  • Hello and thank you for your post,

    I am so sorry to learn of your dad's situation this must be a difficult time for you and your family.

    Have a look at our section on ascites on our website, this explains what it is, and what happens during the procedure. There is also a section about permanent drains and how to look after them.

    Signs of infection could be a temperature, the site where the drain is inserted looking red or swollen, abdominal pain and a change of colour in the fluid. If your dad develops any of these symptoms or the drain falls out then do let a doctor or nurse know as soon as possible. Do check with the team at the hospital and your dad's GP who it is that should be contacted if this does happen.

    Unless the hospital instructs otherwise, your dad will be able to have breakfast before having the drain inserted. The hospital will let him know if they need him to be nil by mouth.

    I don't know what support your dad has from the community teams, whether he has been referred to district nurses or a specialist community palliative care team to help manage symptoms at home. This is something your dad can discuss with his GP as they will be in charge of his care.

    Preparing for someone's end of life can be a very difficult and uncertain time, this may be difficult to read but just so you know we do have information on our website that may be useful. There is also information about caring for someone in this situation and how to look after yourself and get support.

    I hope this helps, Please feel free to get back to us if you need more information or support. Give us a ring if you would like to talk things through with one of our nurses on our helpline. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care, all the best

    Jemma 

  • Thanks very much for your reply Jemma much appreciated. 

    We were passed over to palliative care who have visited us once and gave me a book to read about end of life and suggested we start preparing in terms of looking into funeral arrangements. At this time we aren’t ready to start calling funeral directors not whilst my dad is still with us. 

    I know we are close to the next stage but focus at the moment is working with GP and hospital to ensure we keep dad as comfortable and pain free as possible. 

    I’ve read the section on ascites and drains so feeling a little more prepared. I’m sure after the drain is fitted the district nurses will be informed so we can manage his care together. 

    thanks again for your response much appreciated  

    Katrina