new to board - my story

[haze1uk]

It was been a few weeks now since my life has been turned upside down and I am now ready to write, but I have been looking at this site a lot. My Mum has recently been diagnosed with cancer of the pancreas and has spread to her liver and both lungs. We had the diagnosis two weeks ago and prior to this was jogging around the block with her personal trainer, out all of the time, very active and very social. She has suffered for a while about various non specific aches and pains and was admitted to hospital on the suspicion of gall stones or a liver infection, but then we got the bad news. She is only 57 and it scares me to see how much she has deteriorated in this time. She is out of breath just walking to the kitchen and cannot manage stairs unless she is on all fours. It scares me how quick it has got a hold on her.

The cancer is inoperable, it is on the body of the pancreas but she has been offered chemo, which commenced this week (GemCap). She now has a macmillan nurse. She has been so strong about this and is not ashamed and wants everyone to know. The cancer we have come to terms with and we know time together is precious, but what scares us all the most is what to expect and what her quality of life will be like. No one knows as everyone keeps saying 'everyone' is different?

I don't know what else to say at the moment, except why my Mum? She has lead a good life. Never smoked, drunk excessively and eaten healthily. It makes me so angry to think that life is such a lottery.

Thanks for reading x

[Clairey]

I'm really sorry to hear about your mum.

I know it's no consolation, but it's true, everyone is different.

My Dad, 72, was diagnosed with PC only 2 months ago and has deteriorated so fast... he was fine it would seem until his diagnosis and having a stent put in.

Now we're just coping day by day with everything this awful disease throws at us, Dad has been in hospital on and off over this time. It seems the periods between each 'flare up' get shorter. The cancer has spread and the main thing is to be there for your Mum, spending quality time and making sure she knows how valid her contribution to your lives she's been.

I wish you well and hope you find the peace you're searching for.

As it would seem there are no miracle cures, but Chemo can help, keep your Mum fit and well, eating little and often and be as patient as you can.

With hope always

[millyjo]

Dear Haz1uk,

So sorry to here the devastating news about your dear mother. Having lost mine over 12months ago to the same terrible disease, my heart and thoughts go out to you.

It is as people have said, each individual unfortunate to have this disease have differing severity of symptoms, and to try and tell anyone what to expect or do for their loved one is difficult.

As you say time with your mum is now more precious than ever, and I'm sure you will make the best of it.

My mum, prior to diagnosis was fit healthy, never smoked, drank or abused herself in any way, so to see someone deteriorate so rapidly in front of you is heartbreaking.

Will be checking in on forum to see how you and your mum are doing, but look after yourself as well as your mum.

Thinking of you.

Millyjo

xx

[haze1uk]

thanks, it's nice to know people are out there and know how I feel. Mum didn't have her 2nd chemo session today as her platelet count was too low (not entirely sure about this - if you can shed any light?), she is going back in next week. not sure if that is a good thing or not - she says that her body has responded well to the chemo as per the hospital, so I hope this is the case! Just taking each day as it comes. Will keep you updated x

[haze1uk]

Mum's got pneumonia - on top of everything else so back in hospital. Chemo has stopped and she was refsued the second blast even before the pneumonia because her platelets were so low. Now we have to wait to see if: A) she recovers from pneumonia to be considered for further chemo and B) if is able to continue chemo and her platelets are still low they could stop the treatment for good.

a year has now turned into months and I am really struggling now. I'm not ready to lose her and she's not ready to go. She was only diagnosed 9th August.

[Clairey]

Hi

I hope you and your Mum are ok ?

Been thinking of you, my Dad has been in hospital for 4 weeks now and we're hoping to get him home this week as all Medical intervention has been withdrawn.

Please let us know how you are doing, I hope you are are all ok

Xx

[Ellie]

To Haze and Clairey

So sorry to hear what you are both going through. It's so awful that some people don't have much time after diagnosis of PC. Everything you read says it's so hard to detect and to treat. The sudden decline of someone who was previously so fit and well must be so hard for you both and like us all, you probably feel helpless and that things are beyond your control.

I am sure you are both doing what you can for your loved ones and that in itself will give them some comfort, knowing you love them and are supporting them through this awful time.

Hope you both find the strength to cope with all that is happening right now.

With my best wishes

Ellie

x

[Clairey]

Thanks

My Dad is still in hospital, he's had an abdominal tap this week, his 2nd, draining 8 litres of fluid off this time... he's now just skin and bone.

Contracted C Diff as well and was placed on an isolation ward. I must admit we find this the hardest... 1 min you're allowed to visit all and anyhours because my Dad is Terminally ill, the next they move him and visiting times are enforced. We're very hopeful he'll come home to spend his last few weeks with us at home soon, we made a minor break out today when I loaded him on a wheelchair and went for a walk around the hospital lol

The weeks seem like years but also like mere days...

Hold in there everyone, hopefully we get just enough time to show our loved ones that they're relevant and have a part in our lives however insignificant that may feel right now.

I keep saying to my Dad " whilst you're breathing & speaking you're my Dad and I need you"

Love and God bless to you all

xxxx

[Ellie]

Good for you, Clairey - I bet your dad enjoyed his trip in the wheelchair. On top of everything else, having restricted visiting must be hurting you but let's hope your dad gets sorted out soon and can go home to you.

Keep strong.

Love

Ellie

xx

[haze1uk]

Hi Claire - seems you and I are going through it at the moment as well, not to mention what your Dad and My Mum are going through. It's the hardest thing when you see them in pain and would do anything to stop what is happening. we are constantly living for the next piece of news or new development.

Mum has responded well to the antibiotics and is hopefully coming home tonight and is seeing the oncologist on Friday to see if she is recovering enough for chemo. We have oxygen installed in her house now, they have added hand grips, shower stools etc, everything she needs to help her. She is so weak but so strong mentally, I hope she doesn't overdo it but how can I tell her to sit back and do nothing when she was so full of energy only a month ago?

Thanks to everyone for the kind messages

x

Hazel

[Clairey]

Thanks Ellie,

Yes Dad enjoyed his 'Jolly' as we called it... but he hasn't been well enough for a return trip since, some of the nursing staff seem to make visiting very difficult

( we bend over backwards to be polite and not get in the way), poor Dad is on his own a lot to cope with Dr's etc and it's all very confusing for him, he seemed to be doing well but has retreated back into himself since a nurse ordered him to eat or not go home. It's a general ward and they have little/ if any knowledge of PC or any cancer, most of which affect appetite and ability to keep down food.

Hazel, the Platelet count would, I assume be an indicator of how well your Mum can fight infection as the Chemo would be dangerous if she had little/no ability to fight infections... Dad never got to his 2nd chemo session, the 1st killed off what little defence he had anyways but I hope your Mum stays fit and well enough for hers, keep the faith!

I'm glad you've got Mum home, we are still waiting and I wondered how quickly you had the equipment you needed installed? I'm getting so impatient to get Dad home before he falls ill again and we have a list of things we'll need before he can come home, the Mcmill nurse is lovely but due to dad being in isolation ward last week things have been put on hold.

Keep me posted on your news and take care of yourself and your Mum

Claire xx

[haze1uk]

hiya - hosptal were great. They talked about equipment on the Thursday and it was installed and ready for the Saturday evening for her to come home to, which was amazing. Mum had a relatively good week and going to sisters wedding tomorrow so am so glad my mum is gonna be there for it. She is back to oncolgist on monday to find out about 2nd chemo possiblilities if any so cross everything.

keep on going

x

[Ellie]

Hi.

Just to say that I hope you all have a wonderful day at your sisters wedding tomorrow. You must be so happy that you Mum will be there to share her special day.

Hope all goes well and that the sun shines for you all.

Best wishes

Ellie

x

[haze1uk]

ah thanks x wedding was lovely and Mum stayed up from 7am til 9.30pm without a sleep! Can't remember the last time she did that. Oncologist wants to see her in 5 weeks to let her get over the pneumonia and then discuss possibilities in chemo after that - so no new news to be honest. She is comfortable, at home and has good and bad days - she is so frsutrated cos she has no strength and this is the hardest thing. I know she wants to do so much but her poor body is giving up on her :-C she's such a fighter x

Hope your Dad is OK.

[Clairey]

Hi,

so glad your Mum made it to your sisters wedding and all is going well !

My Dad has been home nearly 2 weeks now... a lot harder than we could ever have imagined but well worth it!

Apart from a chest infection & tiredness he's doing really well and it's so nice to have a bit of 'normality' back in all our lives after weeks of treatment and hospitals. Ok, we all know the outcome won't be good, but we nearly lost Dad twice recently and just to have him home and not constantly be saying the 'C' word is nice

Wishing you well, keep touch as will I.

May we grant peace for those suffering and relief for those who feel they can't go on

but for now...

strength & a future, no matter how long, we didnt think we had

with hope always

Claire x

[Clairey]

My Dad died on Weds 10th Nov '10.

Thankyou to everyone on here for your posts... and although we knew what to 'look out for' as his time was approaching due to you all, it was still such a shock.

Diagnosed 24/6/10... Died 10/11/10

Godbless to you all

xxx

[Nardobd]

Hi Claire

I'm so sorry to hear that your Dad has passed and wanted to send my sincere condolences to you and the family.

I don't think anyone can ever prepare for the loss of a loved one - no matter who much it is expected, it always comes as a shock. I know that you had some good times with your Dad - the wheelchair escape springs to mind - and I hope in time you'll be able to look back on those memories with a smile instead of tears.

When you need to vent or just an ear, don't forget we're still here for you.

Love

Nicki xx

[millyjo]

Dear claire,

So sorry to here the news of your loss, my thoughts are with you and your family.

As you say dispite knowing the outcome of this terribe illness, it still comes as a shock when your loved one passes.

I am still trying to come to terms with it.

Kinds regards,

Millyjo x

[lynbo]

Dear Claire

So sorry, thoughts and prayers with you, I am still in shock after losing my husband, nothing on earth prepares you for this whole terrible thing

xxxxxxxxxxxxxxxxxxxxxxxxxxx

[Juliana]

Hi Clairey,

*hug*

so sorry to hear this....

Juliana x

[Clairey]

Thankyou all so much xx

Far too difficult to talk about just yet, and I have no desire to scare everyone else with the details, which I would do right now as it's all so raw and I'm so angry

Funeral directors tomorrow... no time to grieve really, Funeral's on the 25th & will try to keep in check till after then as my Mum needs me for now.

You'll never know what a help it has been reading the posts on here... just knowing you all understood has helped enormously

Thankyou again

xx