Mum

Hi Jules,

I can give you my oft repeated advice that would be so useful for your family.

Get a phone chat with your mum's GP, or your own.

Then just tell them everything is going downhill & you need physical & mental help because this is a heavy weight to shoulder alone.

What you need is a referral from the GP for a hospice nurse. I'm absolutely glad we did this, they have so many ideas, great advice, tremendous support, access to prescribing medicines without going via the GP. And they are there for you all of the time, be it with another nurse if your assigned nurse is very busy or has a day off. And a 24 hour hotline during weekends. They can cut through any red tape to get info from the hospital departments which are relevant to your mum.

Have a quick browse at what a hospice can provide, I promise you won't regret it.

PS: They visit you at home, so no travelling.

It's my go to answer when I read people that are in a similar situation to you.

I hope this gives you a little help, or a big help.

Best wishes to all of you,

Graeme.

Hi Graeme,

Thank you for the advice, I have to say that the hospital have been great when I have phoned and thankfully we already had power of attorney set up so hopefully that will help getting info too. I'm taking mum to the GP on Wed so if mum is reluctant to let me go with her I will give them a call myself.

Thanks

Jules

Hi Jules,

I too have power of attorney & have the car, the house, & mum's wishes in my name.

I know how good the hospital treats its patients, but I found the problem was communication between departments.

I wonder, does your mum have a nurse who is handling your mums case, a liaison nurse to collate every detail into 1 folder? They will speak with you, we've been there.

I just found that things move quicker with a personal hospice nurse. And you'll get updates when they have any information.

And your original post would be given so much attention too. 

I still advise you give it a try, I'm not pushing you, but it would help no end to have this outlet.

Best wishes,

Graeme.

Hi

Thanks yes we have a nurse at the hospital who has been great and talked to me, mum is starting to feel a little more positive and managing to eat a little more which is great and now have our first appointment with the oncologist so starting to feel like we are moving a little now. Just hoping that mum can stay a little more positive and try to keep eating so that we have options, at least in terms of managing things.

Off to the GP tomorrow so will chat about the possibility of a hospice nurse too, thanks

Jules

Hi Jules,

First of all I'm so sorry to hear of your Mum's diagnosis, my husband has OC Stage4  and it's just news that nobody ever wants to hear.  We've had various different types of chemo for a while now, and he also had a stent fitted a while back - it can be a bit painful at first as it takes a while to expand and fully settle in, painkillers will certainly help so I would encourage her to take them and not suffer.  

I hope your Mum agrees to have you along at the appointment with the oncologist, it is a lot to take in and a second pair of ears would definitely be beneficial especially with the amount of emotions you go through.  I would suggest taking along a notepad and preparing any questions you have ahead of time.  And do remember that when they talk about treatment and side effects with chemo that these can affect everyone differently - just because something is a potential side effect it doesn't mean you will have it.  Hopefully it will help once you have all the details and a treatment plan in place.

In terms of nutrition - ask if they can give you drinks like Fortisip, they are small bottles which come in different flavours, and are full of protein which might help her with nutrition and weight gain, your GP may be able to prescribe these for her also.  

I hope this helps a bit, if you have any questions please do ask on here, everyone's experience is different but there's lots of lovely folks on here that can offer advice or just an ear if you need to vent.  Lots of luck with the meeting with the oncologist, do let me know what happens - sending you all the best wishes.

x

Thank you, yes we have our appointment now for the oncologist and poor mum didn't get much option with me saying I was coming, thanks for the advice and I'll take something to jot down the info.

Thanks again

J