Debra and Phil’s story. Phil was diagnosed with pancreatic cancer in 2018.
Since October 2017 Phil had complained of pain in his abdomen and had visited the doctor on numerous occasions. They were looking for tuberculosis and it wasn’t until we pushed for an MRI scan in late December that the diagnosis was made.
We found out that Phil had stage 4 pancreatic cancer and liver metastases from the GP on 12th January 2018 – 2 months after his 65th Birthday.
Facing the future
We asked for a copy of the report from the scan, which once the news had sunk in we were able to process in our own time prior to meeting with the consultant. The consultant was cold and factual, offering Phil chemotherapy but advising that this would make him very ill, affect his quality of life and may even hospitalise him. Phil refused this and we were told we had weeks together!
After the initial shock we decided as a couple to face this fate together.
Someone gave me some sage advice, treat Phil’s death as another major event in your life, like you would a wedding or a birth of a child. So, that is exactly what we did. We got engaged again on Valentine’s Day and spent every available minute together. Sharing things such as photos, family memories, time with friends, enjoying the simple things in life like music. Luckily, we had spent two years packing in many adventures prior to Phil’s diagnosis.
Maintaining Phil’s weight
Initially, the weight started to drop off of Phil - 8lbs in one week! But I spoke to the nurse on the Pancreatic Cancer UK Support Line and she advised for us to get Phil on enzyme replacement immediately. We were told that the doctor would ask questions about diarrhoea etc, but to stress that this treatment needed to be used immediately and not wait for the standard symptoms of malnutrition that come with pancreatic cancer. The nurse sent an email which I shared with the doctor and Creon was prescribed. The following week Phil’s weight stabilised. This coupled with a high calorie diet maintained Phil’s weight for about 10 weeks.
We were assigned a hospice nurse and found that by clearly documenting all medication taken every day and how it affected Phil, we were able to change medication easily. Although pain management was an issue for Phil throughout the journey.
We tried Oramorph, this made the pain worse in his abdomen. Oxycontin made him hallucinate badly and act as if he was drunk. Finally we got him on slow-release Zomorph and this agreed with him and we were able to use normal Zomorph for top-up. He also found that peppermint oil capsules really helped the discomfort caused by the pancreatic cancer.
Phil wanted to be cared for at home and this is exactly what we achieved. When Phil was in decline the district nursing team organised for a hospital bed to be available at home and we managed with this and a wheelchair until 5 days before his demise, where he was bed bound and lost his swallow reflex. When this happened Phil needed a syringe driver to dispense the morphine and later diamorphine.
Specialist care at home
I had survived many months on very little sleep and Phil now needed more specialist palliative care. We had completed the forms previously for care at home but the processing took a week! We purchased a baby monitor with a camera so that he could communicate when sleeping apart.
When the palliative care started we were inundated with people! All very daunting for the family. Hospice nurses, night sitters, palliative care 2-3 times a day and the district nurse teams were all involved. In the main everyone was amazing and their intuitive compassion touched the whole family.
However, a couple of observations – if you feel the care your loved one is receiving is not right – then don’t be afraid to voice your concerns and remember it is your home. Phil and I had a power of attorney for each other, both for health and for property and financial affairs – this made things easier for me as his carer. Also, make sure you claim the benefits you are entitled to as the extra money for home bills will be needed. Our heating and washing machine was on constantly.
I was involved in all of Phil’s care and wanted to be – I am glad I was. I can honestly say that I would not have done anything differently for Phil and feel honoured to have been able to do this for my husband. We had time to plan his life celebration together and it was a great send off, music he chose, a cardboard coffin with all his own photos on and his friends all remising his life together.
I miss Phil more than words can describe but we had nearly 16 weeks to fall in love together again.