Confused

Hi

This sounds very strange!  Could it be the phone call was from the Specialist Nurse who works with the medical team, who would look after your dad?  I don’t think the hospice would be involved at such an early stage.   If you have a name and contact information I would phone back to check.

It sounds like a mistake!

Good luck!

Hi Jac, thanks for your reply. My Dad said the nurse was from the hospice but I'm wondering if he has picked her up wrong. He has a phone number but both mum and dad won't phone it and I think Dad would probably have to be with me for them to speak to me due to confidentiality. He has his ct scan tomorrow so things are moving quickly, he's only waited 3 days since endoscopy!

Hi Jac. Firstly, sorry to hear of your Dad having this invisible enemy as I call it. I think that it is probably one of the leading nurses on the clinic team. i can only tell you what happened in my case.  I first had a Barium Swallow test, bad result. I then had an Endoscopy. I then was contacted by a "Specialist Nurse" of the team, who then got the Dietician involved. Following that, I had a CT Scan, it revealed the tumour was 5 cm long. The Specialist Nurse called me and told me it was Cancer, before I saw the Dr in the team.  I then had to have the Tube through the nose, down into the stomach for several weeks. That was painful for me, I suffered mouth ulcers and Blisters. I then had a PET scan to check all was in order. Following that, I had a PIC line fitted, best thing since sliced bread, I have a very strong needle phobia. I had a panic attack when they put the PIC line in. I had a keyhole surgical procedure to check organs, and to remove the tube and replace it with a JEJ feeder. It attaches to stomach by 3 stitches, a lot better than the nose one. I then went under Chemo therapy, In Hospital for the IV sessions and 24 hours on a FLOT.  Several of them were delayed because I was to weak to go on, but eventually, it was over. Next I had the Big operation to remove the type 2 tumour, and they rebuilt my insides, the stomach is now the Oesophegus. After a couple of months building my strength back up, I was due 6 more Chemo sessions. I only managed 3.  To this day, I am still on the JEJ feeder, Oesophagus keeps closing and so, I have had three more Endoscopy Dilations since then, and due another one soon to stretch it open. The operation was offered to me, because I was still young, else as the Dr said, they would just keep me comfortable until lights out. That's my experience to date, and no care home has been involved at any stage.

Try not to worry, let them do their jobs, and have faith, if your dad is like me, he probably does not want to know or talk about it, It feels we are on borrowed time, and we want to show the ones close to us, that we love them, and everything will be fine. Hope this is some sort of comfort for you too. Remember McMillans, They have worked wonders for me. I wish you both all the best,