Mum feeling abandoned

[Dollysdaughter]

Just wondering if anybody else has had this experience and if it is "normal" or if we should be concerned.

Mum has had 3 cycles of Gemcitabine after which she had a scan and saw her oncologist. She wasn't told anything specific, just that the tumour looked about the same and that, due to her low tolerance if the chemo, the dose would be lowered and the steroids removed. For various reasons, which she didn't really understand, she then had about a month without treatment and had her "new" chemo last week. She doesn't have any further treatment scheduled though and is not due to see oncologist until May 26th.

The problem is, mum is in Leeds and I am in Kent so I can't always be there and mum finds it hard to find out all the things she wants to know. She feels like she has been abandoned treatment wise, that they have given up on her.

Really interested to know if these kind of gaps in treatment and "one-offs" are normal in anybody else's experience? Thanks

[Dollysdaughter]

Also meant to say she has called to speak to oncologists secretary a couple of times and been told that he knows what he is doing and to wait for her appointment on May 26th. Two and a half weeks is a long time to wait though when mum is in such an emotionally desperate state.

[Guest]

Was your mums bloods too low, is that why she had to have a break? That happens with my dad and he has quite a few breaks because of this.

Can your mum hand over all the dealings with these people to you? There is a big distance between me and my dad but I make all his calls and deal with all his appointments. They will send him letters with ridiculous long waiting times for appointments, I call them up and explain everything to them and usually I can change them.

Your mum shouldn't have to sit back and wait for these appointments.

[Didge]

Well my partner has had lots of gaps in treatment but has always known why. Secretaries are not the people to give information! The oncologist may well know what he is doing but your mother doesn't! We have an assigned nurse at the hospital who is a mediator and information provider which is great. I agree that it would at least good to be a person listed who the hospital can talk to, but you may need to get advice from MacMillan nurses or the nurses here to find the best way to find out what is going on. Good luck!

[RLF]

That's not good, we've only had good experiences really with Leeds so I'd expect she has a different oncologist to Carl (ours is a Dr A don't think we're allowed to give out names but hopefully an initial is ok) . Have you rung yourself? Your mum has to give the secretary her permission for you to speak to her but you can ask all the questions you need to then. I've found our oncologists secretary very helpful.

Rob x

[Dollysdaughter]

Thanks everyone, I have tried to get info myself but everybody says they are not the one to talk to! Rob, we have Dr R so maybe we need yours!! I may even have a day trip over to Leeds next week and drop in on them to find out for sure what's going on! Thanks again for your advice and reassurance, much appreciated,

Sara x

[PCUK Nurse Jeni]

Hi Sara,

Gemcitabine would not normally have a steroid with it, unless of course they were giving it to prevent a reaction, such as a rash?

The appointments would be given based on the regularity of the chemotherapy regime - so, either weekly, 2 weekly, 3 weekly, or 4 weekly regimes. The most common ones used in pancreatic cancer would be 2 weekly or 4 weekly regimes - Gemcitabine is 4 weekly, as it is once a week for 3 weeks, then one week break, consisting of one whole cycle (4 weekly).

Are you sure that they have not just reduced her dose of the Gemcitabine? She should know the names of the drugs she is having, as she will have had a Patient Information Sheet with the drug information, plus she would have had to sign a new consent form if they were different drugs.

I think its important to have as much information to hand as possible, as this can help others to comment. I agree with Didge about getting your mum to speak to the Nurse specialist who is looking after her care, and then, she needs to write things down so that she can recall what they say, to pass it on. Errors in communication can arise when there is not complete information and this is what might be causing confusion maybe? For example, if you had the names of the drugs, then many of us would be able to say whether its a 2 weekly, or 3 weekly regime etc...

I also agree about the secretary saying the consultant knows what he is doing, as this is not very explicit for your mum, and it is not helping her to work out her regime. So, maybe they could get a nurse to ring her or something like this, to reassure her?

Kind regards,

Jeni.