Mum

[Peadie]

Hi,

I’ve been reading people’s posts and have plucked up the courage to ask some of the questions that I can’t ask my Dad..

My mum was diagnosed with PC over 3 years ago! She went on a clinical trial and out-lived all expectations.. she had to have chemo tablets every day, and have injections at hospital every week, but wow! It was worth it. She even started playing tennis again!

However, in December she started to vomit lots and feel unwell. She had some tests, and my Dad told me that it had spread to her bowel. She was supposed to start chemo a few weeks ago, but she and the docs have agreed that she won’t proceed, because it will be very invasive, and would only add a couple of months to her life. So she is now being looked after by palliative carers.

She’s very depressed and lies on her bed all day. She gets quite a bit of pain, eats very little, and vomits what she does. She also sweats quite a bit. She has no energy (not least coz she’s not eating, I imagine), and any trip downstairs or into the garden is swiftly followed by a long rest.

We’re all devastated, obviously, but grateful for the 3 years we didn’t expect to get. But it is still heart-breaking to watch your mum like this.

Any advise or thoughts would be really welcomed.

Edited March 1, 2013 by Peadie

[DRAD3]

Hello and so glad that you found the courage to post. I am so sorry to hear about your Mum, I can understand how you feel and your need to want to know what to expect. It is very difficult, unfortunately, for anyone to predict timescales. I know this is a very unhelpful answer and I understand how frustrating it can be, not knowing. If you are talking about palliative care, then I guess the main thing is just coming to terms with what that means and that ANY time you have is now very, very precious. I wonder if your Mum has a palliative care nurse coming to see her at home - Macmillan or similar? They are often very helpful and willing to talking frankly about what is going on and what may happen next - they are there for carers and family, as well as patients - perhaps give them a call? My husband did not want to know what to expect, but I did, so that I could always be one step ahead and be able to help him. Our nurse was excellent - she respected both of our wishes, answering my questions out of his earshot. They hopefully will be able to offer your Mum the support she needs - she is obviously devastated, scared and very sad, understandably. So very sorry that you need us but know that we are here and will try and answer your questions, will also listen to your worries and concerns - so much better to get them out to people who understand.

Take care, sending you love and strength.

Deb

x

[Peadie]

Deb,

Thank you so much for your kind and wise words. I guess I knew no one would know the answer, but possibly just wanted to put it out there. I really appreciate your response, and am sorry that you have clearly been there..

I hadn't thought that I too could contact Mum's macmillan nurses.. when I visit tomorrow, I will try and get names from my dad, and then give them a call. I really don;t want to distract them from their important jobs, or take up valuable time, but from wht you say, I could ask a few questions, and get a bit more info.

I'll let you know how I get on, but thanks again for getting back...

P

[Catherine]

Hello Peadrie,

Please don't feel bad about contacting people. This awful illness does not just effect the patient and Macmillan etc are there for families too. By talking to your mums health team you will be better equipped to support her and yourself in the coming weeks. I think it is good to know who to ring about what and what everyone does and why. I never really took much notice of my girl guide training to 'be prepared' until now. As Deb says time is precious make the most of it.

Sending you love

Catherine xx

[DRAD3]

Hi P

Catherine is right - do not feel bad about contacting people and never, ever think that you are wasting people's time (time to be very un-English!!) Your Mum needs you and you can only help her if you get what you need - all the support you can get. It is the hardest thing in the world to do and knowledge is power and a good support system around you will keep you strong. Good luck and remember we are here too.

Much love

Deb

x

[Peadie]

Catherine & Deb... thanks for your replies. I looked up the hospice today, and NEARLY rang, but felt a bit too emotional to go through with it. It's been one of those days! I went to see Mum and Dad this afternoon, and was going to ask Dad about it, but I really fear he'll think I am imposing.. I'll probably try and ring the hospice directly, and see if I can sort something without their knowing. Mum was lovely.. she's quite calm, and but annoyingly I couldn;t hold it together, but she soothed my sobs.. I think she is quite accepting of what's happening now, which is a comfort.

Thanks again for being there. Feels like I have some secret friends who I can talk to about this nightmare!

Px

[Catherine]

Oh bless you,

Sound off whenever - Deb in particular is a tower of strength and always knows the right things to say.

Ring the hospice, our local one is lovely. I went with my mum on Monday (she goes for massages for previous cancer) and it did choke me a bit, but they were great and they do all sorts of things like pamper days and people being able to go for the day. They also have a specialist palliative care consultant there who can sort things like pain relief etc quickly and the nurses said they were an extra pair of hands to push the NHS along if needs be.

Our Macmillan nurse is lovely too, so just give them a call. And don't worry about breaking down, or getting upset that is totally normal and they will be used to it.

Your mum sounds lovely, and she's lucky to have you there for her.

Lots of love

Catherine xxxx

[DRAD3]

Hi P

I have lost count of the number of times that I have put off phoning for help because I knew that I would not hold it together. As soon as you put into words why you need help, it makes it very real and all those emotions you are holding in suddenly flow (or should I say erupt!) out alongside your words (drowning them out!). You will probably worry that you sound like a gibbering wreck. Hey, who cares?! - ring this hospice, Catherine is right, they have seen and heard it all before and will recognise it for what it is and patiently wait until you are able to speak coherently. They are there to help and will just want to. I am sure you will have a "good" day when you feel you can do it.

I am so glad that your Mum seems to be coming to terms with things - I can't imagine how difficult this must be for her - you are obviously a very loving family and that will give you all the strength to cope, I am sure.

So glad to be able to help - this site, for me, was also a bit of a secret too. My husband was not one for accepting help from anyone or talking about his feelings, his fears or his worries. Lucky I was a mind reader and had this forum to vent all the things that were buzzing about in my head - it was (and still is) a godsend.

Take care, P, and I hope you make that phone call soon.

Much love

Deb

x

[Peadie]

Hi again,

Apologies for the delay in getting back! Though I have been reading other posts and quietly gaining support!

I rang the hospice eventually, and they were really kind (while I sobbed!) but said I couldn;t discuss Mum's case without her permission. Or Dad's. I keep meaning to ask Dad, but things have moved on since then really. My brother came over from Kenya, which was good, though sad.

Mum is in bed, eyes closed most of the time, taking oromorph about 4 times a day. Her tummy is getting bigger and bigger (while she gets thinner and thinner!) and the nurse says they will drain it when it becomes tight. Mum walked to the church on Monday (most unusual - she rarely leaves bed)- it's about 50 yards from the house, and it took her 30 mins, holding onto Dad... glad I didn;t see her, but also glad she got out. I don;t know whether she will manage that again.

We are all quite calm now about what is happening, to the extent that my Dad is asking us for photos for the funeral card, which I am not that confortable with! Not sure if he has been given a time frame, but he certainly seems to be thinking about the next stage, when she's no longer around. But that's reality I guess. IN a way I don;t want it to go on for too much longer, as Mum is so sad and depressed (when she's awake), and there really isn;t any hope..

Anyway, thanks again for your kind words and support. I read the other posts about really young people who have this nightmare disease, and in a way, I feel fortunate that Mum at least got into her 70s. Soooo very sad for these 30/40/50 year olds, and their families.. thinking of you all

pxx

[DRAD3]

Hello P - so lovely to hear from you but so sorry to hear how poorly your mum is. It is a difficult place to be - knowing what is happening, resigning yourself to it, wishing for it sometimes and wishing it was everything but that the next moment. I smiled to hear your mum walking to church - how courageous of her, how strong how determined - she sounds like an amazing lady! I feel for you all and understand your sadness but also your calm. It is a sign of great strength to find peace in this situation and I send lots of love to you, P, your mum and all your family.

Take care - we will continue to think of you and send a collective hug.

Deb

x