Help and advice about PPC: Hi I messaged here a... - My Ovacome

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Help and advice about PPC

sjg81 profile image
18 Replies

Hi

I messaged here a couple of days ago. My mum has been diagnosed with PPC but has been waiting for results to come back with regard to grade etc.

A nurse has just rang and my mum has to go in to hospital on Friday at 1pm.

She has just been told to bring someone with her. I would be going anyway but is this standard practice? After speaking to some lovely ladies on here that helped me to calm down, I'm now worried sick that it's going to be even worse than we originally thought (if that's possible).

I hopefully look forward to hearing from you soon.

Many thanks

Sarah x

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sjg81 profile image
sjg81
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18 Replies
Jen85 profile image
Jen85

Hi, from my experience it's not uncommon. My nurse said always bring someone with you to help remember answers and questions (she also advised a note book which I always take and is very useful!). I've been advised to bring someone on the good and less good appointments. Hope that helps. Try not to read into it too much, which I know is hard! X

sjg81 profile image
sjg81 in reply toJen85

Hi

Thank you for getting back to me. It's my mum's first appointment since being told she has cancer so I'm hoping that it's just to have someone there to take in treatment etc. I've been reading everyone's stories on here and it's really made me feel better until the phone call today. But thank Sarah x

Jen85 profile image
Jen85 in reply tosjg81

If it helps my mum is a Macmillan nurse and she says she always advises it :)

sjg81 profile image
sjg81 in reply toJen85

Once again thank you for getting back to me and thank you to your mum 😊 I probably am just reading too much into it....onwards and upwards....thank you x

IrishMollyO profile image
IrishMollyO

Hi Sarah

Try not to worry that they were asking if she will have someone with her. It really is best not to go alone as they will be telling her so much and someone needs to take notes . If she has any questions write them down in advance . I deeply regretted going on my own for many years as I didn’t want to worry family by taking them. Big mistake. My oncologist and nurse at the time were quite dismissive and eventually having someone with me made a huge difference.

You will be a huge help to your Mum Sarah. Both of you will take everything in and as it’s her first big appointment she will probably be a bit nervous. I just want to wish her all the best and we are all here for you both if you have any questions . Take care

XXX

💚💕

sjg81 profile image
sjg81 in reply toIrishMollyO

Hi IrishMolly

Thank you so much for taking the time to reply. As I said to Charlotte my mum has had a tough few years so it's always been me and her at hospital appointments.

I did panick earlier but now that I've calmed down I'm hoping it's just because there's going to be a lot to take in.

Thank you for all your help and support and I just want to say I've been blown away by how kind and inspirational you all are.

Thank you again

Sarah x

CharlotteSo_UK profile image
CharlotteSo_UK

Hi Sarah. My mum was diagnosed in 2010 with low grade OC. I remember the initial tests and meetings and then that dreaded one. It still upsets me to think about that time so I fully understand how you must be feeling at the moment - and I’m so sorry your mum and you find yourselves in this horrid situation.

But - don’t read to much into the nurse telling your mum to bring someone with her. There will be a lot to take on and it is so helpful to have someone there to listen, ask questions, take notes. It will be a lot for your mum to take in. We always go in pairs - at a minimum, still do, nearly 8 years on. We find the balance is useful, particularly to compare what we heard as it can be an awfully emotional time.

We took a note pad too, I’m still known to go in sometimes with a list of questions, and the oncology team are always so willing to listen and answer them. Might help on Friday but you will find your own way in this - and remember the specialist support nurses are there to help you through it too.

I wish your mum and you all the best for Friday. It’s so easy to think the worst now - but just remember there are many many women living a full and healthy(!!!) life with, and after, cancer. There is plenty of evidence of this on this site. Take care

Charlotte Xx

sjg81 profile image
sjg81

Hi Charlotte. Thank you so much for your kind words. My mum has had a tough few years and just when we thought it was getting better this happened. It's always been me and her with hospital appointments etc so I would have been there anyway but it was just the nurse being quite persistent with someone being there.

There's part of me just wants it to be here and have a plan in place with regard to treatment but then there's that part of me wants to stay in this limbo/denial bubble.

I want to say thank you again for all your help and support and big hugs to you and your mum

Sarah x

CharlotteSo_UK profile image
CharlotteSo_UK in reply tosjg81

Hi Sarah. I do know how you are feeling and it is just shit. Don't read too much in to - it's so easy to let your mind run away with you but once you have that plan, you'll know what you are dealing with.

Please let us know how your mum gets on. And if you need an 'ear' please do message.

Xx

sjg81 profile image
sjg81 in reply toCharlotteSo_UK

Hi Charlotte. You hit the nail on the head about it being shit. I'm just trying to be strong but I don't if I'm trying to convince myself or everyone else.

Thank you once again and you may regret your offer an 'ear' 😊

Sarah x

Lily-Anne profile image
Lily-Anne

I think they are making more effort to be people friendly and asking you fetch someone would be part of that. It’s easy to try and read between the lines but please don’t look for more reasons to worry. What it will be can’t change now but how you prepare can

Why not write all the questions you want answered down. Even if you end up not needing it, you can’t be too prepared

LA xx

sjg81 profile image
sjg81

Hi Lily-Anne

Thank you for replying. In my logical part of my brain I think of course they would ask you to bring someone for moral support and back up but my panicked, worried and scared part I'm fearing the worst.

I know I need to stop thinking the worst and start thinking positively and all you amazing women on here has given me some hope.

I do need to think of questions to ask but literally at this point all I can think about is the treatment.

Once again thank for your words of encouragement.

Sarah x

Angie-69 profile image
Angie-69

Totally agree with everyone, I always found they spoke to my daughter's and made eye contact with them as if i wasn't there sometimes....found it rude but eventually understood as I forgot everything they told me after each appt lol! I reckon it's back up info banks that's all. Let us know how she gets on and we're all sending you positive vibes hun . Stay strong ya mums lucky to have you xx

sjg81 profile image
sjg81

Hi Angie

Thank you for the message. I've calmed down a little now and I know I shouldn't try and read in to every little thing.

My mum puts on a brave front but I know shes going to be nervous so I need to stay strong for her. Once again thank you for your help and support

Sarah x

Hi Sarah, Good advice again from our friends just like to add I take one of my daughters when I go and when we discuss the appointment I seem to have missed some thing or missed understanding so it is helpful, I'm sure this is why it been advised to have mum bring someone.best wishes to you both take care xx

sjg81 profile image
sjg81

Hi Lorraine

Everyone I've spoken to on this site has been great and it's really helped me over the last few days. At her last appointment my mum and sister swore they heard one thing and I heard another so even 3 pairs of ears aren't that great. Thank you again Sarah x

Hi Sarah, It's true we all can have selective hearing, write down what was not clear and ask next visit ,I hope you are a bit more at ease.

Best wishes to your mum Take care Lorraine xx

sjg81 profile image
sjg81

Hi Lorraine sorry for the late reply. The appointment on Friday was just to say that from the testing they definitely think it is PPC rather than OC. My mum is now being referred to a different hospital. The said they will have their meeting on Monday (tomorrow) then she will be seen on Tuesday. So it's here we go again.

Thank you for replying it means a lot..

Sarah x

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