"Feeling helpless and abandoned"

Following months of abdominal pain and vomiting I finally managed to get my dad’s GP to see him resulting in an admission to DGH on at the beginning of February 2022.

Following a CT scan he was diagnosed with significant bilateral pulmonary emboli, left portal vein thrombosis and a probable rectal malignancy, intraperitoneal malignancy with associated ascites, para-aortic lymphadenopathy and likely solitary liver metastasis. A lot of jargon. Dad is told about his cancer. He phones us in tears.

Dad was discharged mid February 2022 and despite the history of vomiting and sickness the bulk of dad’s medication is oral. Multi-Disciplinary Team (MDT) meeting in 3 weeks.

After a few days dad was back to constant vomiting and dry retching. His GP was contacted  after which a driver was installed to administer his medication.

Rectal biopsy clear and a letter from DGH confirms day clinic attendance for bloods and peritoneal biopsies  at the beginning of March 2022. Results to take 2 weeks after which dad will be discussed at the MDT.

Over the next 3 weeks at home dad continues to battle nausea and pain.

A phone call to the consultant three weeks later to chase up the biopsy results. Nothing yet.

A phone call to the consultant at the end of  March 2022 confirms that the biopsies are positive for cancer. My dad’s timeframe is in weeks, not months. Given my dad’s pain is not improving the consultant offers to examine my dad if we can get him to DGH. He is admitted that afternoon and a fluid drain installed.

Still no word about the MDT. Still no information with regards oncology. Still no mention of palliative care.

Over the next 5 days they continue to drain fluid from dad’s abdomen. They are hopeful he can be discharged early April 2022.

I have asked repeatedly for my dad’s situation to be explained to him. They will look at the pain medication in his driver. They will organise an enema to help clear his bowels. Nothing happens. We are told that he is still being discharged today. What is the care plan? What happens when the drain is taken out? What about his pain medication? What about his enema?

I ask to see the palliative care nurse before dad is discharged. It is now after 4.00pm when she arrives. She is great.

She sits down. She listens. She sees dad. She sees his pain.

She goes away to review his notes and comes back.

She explains that the 'inconclusive’ relates to the primary source of the cancer. Because my dad’s cancer is so advanced it has mutated and spread. Each mutation makes it more difficult to track back. It is likely that it started in his upper stomach or pancreas. But not it has spread. It is significant. It is terminal.

-In my dad’s current state there are no options for either surgical or medical intervention. He is too weak for chemotherapy. With the correct pain relief and if his eating and energy levels improve oncology may be an option. But it is not a cure.

-The fluid build up is due to the cancer with body fluid leaching through organs into his abdominal cavity. The drain allows for this to be taken away and alleviate the pressure on his stomach cavity. They need to take the drain out to see if the fluid build up slows down since having the drain in can encourage fluid build up. A drain can always go back in if the fluid build up gets too much.

-Its about keeping dad comfortable with as much dignity and independence as possible.

-It’s difficult but dad but he needs to motivate himself. With family support he can do as much as he is able to do.

She suggests that his driver medication is changed to increase his pain relief and try a combination of anti-sickness medication to try and combat the feeling sick and combat the being sick.

It is late in the day. Dad has to stay in another night. Hopefully bring him home today.

I am angry.

I am angry for my dad and our family. I understand that the system is under pressure and that there are limited resources. I understand that things just don’t happen and care takes time. I understand.

But I shouldn’t be the one to push all the time. I shouldn’t be the one to try and unpick jargon and terminology. I shouldn’t be the one to explain to my dad what it all means in language that is sensitive and patient and easier for him to take in. I shouldn’t be the one to chase results and push for him to be seen all the time. To help find answers when his current treatment is not working for him. To feel so helpless and abandoned and not able to cope with his pain. With my pain. With our pain.

I know there was a MDT. The professional consultants and team reached a conclusion about my dad? What was the outcome? Where was the patient centred discussion to explain, to council, to listen? Where was the care plan and how this will change moving forward as the disease moves forward? Where was the respect for my dad in all of this?

There are a fantastic group of nurses, carers, and professionals who have so much time and care to give but so much systemic bureaucracy to put up with. Sometimes all their effort and commitment is wasted because of the disconnect between patient and care. My dad was admitted into a system that has, in effect, drained him to such an extent he doesn’t want to fight this anymore. The system and the pain are too much to bear. These are not the last weeks that my dad or his family wanted for him.