My mum

[simonstones]

Hi everyone

Just looking for some thoughts/experiences from others who have gone through similar situations.

Some background...

My mum is 68, and was diagnosed with locally advanced pancreatic cancer in the tail of the pancreas on 2nd July 2018. Some of you may recall my fight to get her surgery last year, after she was dismissed as being 'too complex' with all of her existing health conditions (lupus, type 2 diabetes, liver cirrhosis caused by non-alcoholic fatty liver disease, history of recurrent blood clots and polymyositis to name but a few!). Cutting a very long story short, some 168 days after diagnosis, she underwent a distal pancreatectomy to remove the tumour, which was successful. We entered 2019 feeling much more optimistic and hopeful, and scans revealed that she was clear.

Unfortunately, a CT scan in March 2019 revealed one metastasis on the liver, with a second metastasis seen on MRI in April 2019. The oncology team were fairly certain these were both metastases (rather than primary liver cancer). If she had been able to have surgery sooner, we may not have been in this situation, but looking back isn't going to help. So we went ahead with the plan to undergo chemotherapy with Gemcitabine (6 cycles). Mum has terrible vein access now, so they planned to fit a port. She had her first IV Gem on Monday 20th May, with them inserting the port later that week.

To add more complications, mum fell in the bathroom at home on Wednesday 22nd May, and fractured her right humerus bone, immediately beneath her shoulder prosthetic joint. This required lengthy surgery to 'fix', which she had on 5th June 2019. She came home the week after, and since her fall, she has been requiring full-time care which I am providing. We seem to be getting the arm reasonably on track now, but this latest episode has significantly knocked her confidence, and it also means she is really immobile after the trauma.

Chemo has been on hold until we go back to the oncologist on 11th July 2019; however, her digestion has been really bad recently. I've been suggesting trying Creon since December, but to no success. Two weeks ago, I had to do something as it was very clear that she was passing steatorrhea, and was having terrible symptoms - abdominal pain, gas etc. Our oncology nurse was really helpful and sent off the prescription, so she has been on Creon now a week, and I'm certainly starting to notice some difference in her motions.

However, the gas seems to be worse than ever, and she has quite a lot of oedema (legs and some around her lower abdomen). She also seems to develop really bad abdomen pain around the same time every evening (8.30pm to 9.30pm). I've been trying to work out what is causing what - after her fall I was blaming it on trauma, then on the general anaesthetic after her arm surgery, but I'm increasingly worrying that it's the sign of the secondary liver cancer...

I'm going to ask all of these questions next week in clinic, but just wondered whether others have experienced similar situations, and may be able to suggest things which may help in the meantime? This horrible disease has you thinking all sorts of things!

Thanks in advance,

Simon

[PCUK Nurse Rachel R]

Hi simonstones

It's Rachel here one of the nurses from the support service. I hope you don't mind me posting here, I know that you are asking for first hand experience of people going through this. I am sorry to hear that Mum and you are having such a difficult time.

It's good that you have managed to access Creon and that this is starting to have a positive impact.

There sounds that there could be quite a lot of things going on here and we would be more than happy to chat through these things further on the phone or via email if you would like. Do drop us a call or email and we will be happy to try and help as much as we can.

Kind wishes,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707