Concerned that Support for Dad is Decreasing

[Kerra]

My wonderful dad was diagnosed with stage IV pancreatic cancer in Feb 2018. After 5 weeks in hospital, he was discharged and advised that he could only be offered palliative care. He has since been having chemotherapy and responded so well that he is still with us after 4 years. Thank you God!

 

However, at Christmas he was given a break from his chemo due to a bout of diverticulitis. He was looking forward to 8 weeks off from the chemo appointments and side effects, but unfortunately didn't feel well throughout. His GP sent him for an unrelated scan on his chest which showed he has some fluid on his lung. His stomach is also incredibly swollen (after first diagnosis he had a drain fitted due to ascites but this got taken out around a year ago due to infection risk).

 

Following GP letters to his oncology team, he was copied in on a letter back from the team which said symptoms are indicative of progression, but he has not been told this directly by his oncologist. He is sending emails to the lead nurse, who initially seemed incredibly helpful, but since Dad's decline in health, they are poor at replying or following up with him directly.

 

Our local hospice team have been great with assisting with pain relief, but surely his oncology team should be speaking with him sooner than his next appointment if he has concerns or questions? 

 

His next scan is currently scheduled for the end of April, which I fear is a long time away when he's so swollen on his tummy and in pain. 

 

Does anyone have any advice on how to handle this with his Oncology team? I can't bear seeing him suffer unnecessarily if something can be done to help him sooner.

 

Dad seems to be accepting that he couldn't go on forever and that the day would come that the cancer would start to win, but that doesn't mean he should not be treated for the symptoms and given the necessary investigations and additional treatment.

 

Thanks for listening and any suggestions or advice welcome!

 

 

[Jen]

I hated just reading that it sounds like your father is recently declining.  It truly is incredible though that he has been previously so responsive to treatment for four years.  I think anyone reading your story who as stage four PC would be given hope.

 

Just wondering but has he given you permission to maybe be his advocate and call the oncology team yourself?  I agree that a month could be a long time. Is he due to see the oncologist the same day that he was going for a scan?  Or was he just going for a scan? Maybe if you personally discuss your concerns directly with the lead oncology nurse or even if you were able to discuss directly with the oncologist about your concerns with regards to his current symptoms and intended further management?  You could then ask if a further drain might still be a possibility or at least have the ascites tapped.  Do you know what service originally scheduled him to have a drain placed 4 years ago?  If you aren't getting anywhere with that then talking to his hospice service about maybe having this done?  They might be able to schedule something for you. Or they might be able to give you further information.  If you really aren't getting anywhere with either of those options then if it was me I would take him to the Emergency department in which your Dad's oncology service exists.  If the UK is like NZ then taking him between Monday-Thursday would be best. This could be what is needed to get the conversation ball rolling if everything else has been futile.  

[Sandyvon]

I agree that waiting until the end of April for a scan is too long. If he was supposed to have a 8 week break from chemo, isn’t the end of April twice that time length? The oncologist need to communicate the treatment plan. 
My best wishes. 

[Kerra]

Thank you for your kind replies.

 

The latest situation is that our GP referred him to A&E where he then got admitted to hospital for a drain to be fitted.

 

Unfortunately this was a nightmare experience due to lack of communication within the hospital and the fact that they then found out he was neutropenic.  We eventually insisted on them discharging him as he wasn't doing well in there. He came home and we  have since been told that the scan he had whilst in the hospital showed that his cancer has spread "everywhere". We have taken some time to come to terms with that news as a family and he is now booked in for a drain to be fitted in a couple of days time.

 

We pray this will make him  more comfortable, and maybe even help him be strong enough to try more chemo.

[Floofmom]

Hi Kerra, how are you bearing up?  How is your Dad doing?  Hugs to you x

[Kerra]

Hi Floofmon/All

 

Dad has a permanent drain fitted to his tummy and in the past 4 weeks 20 litres of fluid has been drained off him!

 

He's far more comfortable for it, and he even got his appetite back for a short while. Unfortunately it didn't last too long and he's now back to eating very little, but he's having some good and some bad days. We are taking each day at a time and awaiting his next oncology appointment to find out whether he can be offered any more chemo or other treatment.

 

Praying hard that they can - and that if they can't, he doesn't suffer too much pain.

 

Thanks for checking in xx

[Sonia1]

Hi Kerra, 

 

I was so pleased to read that your dad fought this dreadful disease for over 4 years. It has given me a small glimmer of hope that palliative chemo does not necessarily mean it’s the end. 

 

I am however so sorry to hear that your dad’s cancer has spread and he has not been feeling so well  I really hope he is doing okay as can be in the circumstances and that oncology were able to offer some more chemo xx