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Hi, I’m new here but have been reading posts over the last few weeks.
My dad has been diagnosed with pancreatic cancer nearly 4 weeks ago. We live in the Channel Islands so treatment takes place in the UK. We speak to specialists and GPs on island who are trying to arrange and communicate with Southampton hospital.
A month has gone by and he has not been seen to. Nor do we have feedback if anyone has even picked up his file and CT scans to progress forward.
Hearing the diagnosis was awful enough, my dad has been ill since maybe April this year and they were unable to find the issue until end-August. With no news I’m worried he is loosing incredibly valuable time needed to help him or provide any hope. I’m aware pancreatic is particularly difficult and usually symptom come at later stages.
Im terrified, my family are unsure what to do, they are advised not to go private but I’m unsure why.
Is this what I have to come? Weeks between treatment, or no news, it doesn’t seem right or acceptable to me.
Thank you to other new members for writing in these groups, it helps to know I/we are not alone and everyone seems to have their own story and journey through treatment.
Do I fly over to Southampton for a day and bang on doors and demand a doctor? Is my dad just another person being diagnosed and added to the pile of the doctors workload?
Im so lost and don’t know what this horrible illness is about to do to my dad and the effect it is about to have on my family. But waiting doesn’t feel like the right choice.
Any advice in response to my little rant is appreciated
Hi 87JS and welcome to the online community
I'm sorry to hear that your dad has recently been diagnosed with pancreatic cancer and I do understand how frustrating waiting for tests and treatment to begin can be.
I don't know what the normal timescale is between diagnosing pancreatic cancer and treatment to begin as I didn't have that type of cancer. However, I think you might be more likely to get the sort of information you're after if you post this in the pancreatic cancer group, which I see you're a member of.
Clicking on the link I've created will take you to that group if you're not sure how to get there.
When you have a minute it would be really useful if could pop something about your dad's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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Hi 87 JS
My Dad was diagnosed with PC in April and it was 7 weeks before he began treatment.
He was in hospital for a week just after diagnosis with jaundice so that slowed things down a bit as nothing could happen til that was sorted.
In my experience communication is a weak spot in the nhs. We had to push for information at every turn. You may also find you get mixed messages from Doctors which can be tricky to deal with.
If your Dad is having tests/scans, these will be assessed by the multi disciplinary team looking after him. Where I live, they meet weekly so that can be frustrating waiting to hear the outcome of their discussions. Following that you should have an appointment with a Consultant to discuss his options.
If it were me? I’d try to find out where he is in the system?
Will there be more tests/scans?
when is the MDT meeting and when can you expect to get an appointment?
Maybe start with your GP & see if they’ve got any news? Ask them to email for an update but don’t wait.
I’m sorry you are going through this. The waiting is very unsettling.
Sending a virtual hug
Hi mm and everyone,
Sorry delayed in coming back to you I’ve had my head in the sand.
How is your dad doing? And how are you doing?
We are another week gone, there was one appointment booked in which was cancelled the day before it was due, which hit my dad a bit hard. We now have the first appointment scheduled for Monday. They will be taking samples of the cells.
The hospital set up is very much the same as yours, they meet once a week to discuss cases and admin appears to be the cause of delays and confusion.
My dad is very thin and his mood is low. I’m worried that we have barely started yet; although I think treatment to fight or to do something other then wait around may help him.
I will have a look through the groups and forum to see more about the hospital process although each case is different, I just can’t grasps the delays when the one thing I feel he doesn’t have is time, but weeks still go by. Also any advice on food, he is having a lot of trouble eating.
It’s good to have a place to know others can relate, as horrible as that is
Sending hugs and positivity
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