Hello, I recently lost my dad to stage 4 metastatic cancer and I am hoping I can help others with questions or concerns.
My dad was 73 and diagnosed with met oesophageal cancer in May this year and passed away September, he lived for approx. 4.5 months from diagnosis, although initially we were told he had approx. 1 year.
I want to share my experience and the things we dealt with throughout, firstly the cancer had spread to the liver and my dad was given a biopsy - this biopsy caused an infection which led to a blocked bile duct which can quickly evolve into sepsis - this infection is what sped up my dad's passing - these were the signs:
Constant gut ache
Loss of appetite
Fatigue
Skin sores (mistaken for bed sores)
Swelling of the stomach
Jaundice
We unfortunately didn't know these signs were linked to an infection and by the time we were made aware it was too late and my dad died within 5 days of having blood tests to confirm the infection, I think the antibiotics were administered too late.
Another thing I want to advise people on is if the patient chooses to spend the rest of their days at home rather than a hospice - this was my dad's wish which we honoured but in all honesty I would not recommend and I would push for a hospice referral as soon as possible... My dad dying at home was traumatic to say the least, you have to call the district nurses every time pain medication is required which can take hours, their resources are extremely stretched and on one of the days I tried calling nearly 100 times and I still couldn't get through. My dad was in extreme pain and all we could tell him was we needed to wait.
I would also suggest getting all contact numbers organised beforehand - hospice support, community nurses, district nurses, Macmillan team etc... we had so much information thrown at us within that week and to be honest it was the most stressful situation we have been in.
I would also advise if you are unable to get through to anyone for pain medication - the emergency services are a wonderful resource (You need to request that a paramedic be with the ambulance) and they will be able to administer the morphine - We called them 3 times over the week and each time they arrived within the hour and were able to help us and dad every time.
I also just wanted to say - there is no right or wrong way to look after someone in palliative care at home, I have terrible guilt that I should have done more but we did our best in a very distressing situation and dad died at home with his daughters which was his wish - it is so important to be kind to yourself during this time and whatever the outcome you need to remain proud of yourself even when it feels like you didn't do enough.
I hope this helps someone going through the same situation - and if you are, I am sending lots of love!
J x
