A forum for family, friends and carers of pancreatic cancer patients

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fionak
Posts: 4
Joined: Thu Apr 12, 2012 4:11 pm

Mum just diagnosed

Postby fionak » Thu Apr 12, 2012 5:06 pm

Hello everyone
I am so relieved to have found this site. My Mum was diagnosed yesterday with pancreatic cancer and mets to the liver. It is really unbelievable; she feels fine so far, with absolutely no symptoms apart from occasional abdominal aches which (naively) we had put down to the anxiety she has been suffering since my Dad's sudden death from colon cancer last July. In fact it was only because of his experiences that she was worried enough to go to the GP.
The tumour is 3cm, in the tail of the pancreas. She has a biopsy next Tuesday to work out whether the tumour is neoendocrine and so if it can be operated on. But looking online, this doesn't look very likely?? Does anyone have any experience or knowledge or advice about this? The consultant refused to give any opinion or prognosis until after the biopsy. He was very smiley and 'oh well, what will be will be', which is better than doom and gloom but on the train on the way home, we both had the feeling, "Did that really just happen or are we dreaming?!" To be honest it still feels like a dream because she is so healthy at the moment which I suppose we have to make the most of while it lasts.

The consultant mentioned chemo if the tumour isn't operable. Obviously I will go along with whatever my Mum opts for in terms of treatment, but I am finding it hard to stay positive after the bad experience we had with my Dad's cancer so recently. He had surgery, which took almost 3 months to recover from, then 2 courses of chemo which had no effect. He was soooo ill on chemo and it totally blighted the time he had left, which turned out to be just 10 months from diagnosis. It really wasn't worth going through all the treatment, because his quality of life during it all was so poor.

I really want to stay strong for my Mum but I am struggling. I am 6 months pregnant with my 3rd child and I would love for her to be able to get to know the baby - my 4 year old and my 3 year old adore their grandma and she (along with my husband and kids) is my world; I am an only child. I just can't believe life has dealt her such a bad hand - losing her husband of 40 years to cancer and then, less than a year later, receiving her own bad news. She is a wonderful woman who doesn't deserve it.

I'm sorry if this all sounds self-indulgent when everyone on here is going through terrible times but I am feeling bogged down by it all and wish I could pull myself together and think positive. We are only just coming to terms with life without my Dad and now I can't imagine a world without her as well. But what scares me even more is what lies ahead for her - it's the pain and fear she will go through that I can't bear to think about.
It feels so much better to have typed all of that out, thankyou for taking the time to read..

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Mum just diagnosed

Postby louiepc » Thu Apr 12, 2012 5:56 pm

Dear Fionak

Oh my goodness, what a terrible blow you have all been dealt.

I am so sorry for you to receive this terrible news after going through your Dad's ordeal only a few months ago.

First things first, I know, believe me I really do, how easy it is to get ahead of yourself and think the worse before any of the test results have come back. It is absolutely horrendous getting this news, and I think with most hospitals, you will not get the full diagnosis, potential treatment and/or expectancy, until all the results are in. This is just what they do.

You need to wait until Tuesday. Start making little goals in your head, get Tuesday out of the way, and then however long it takes to get the results. Until then there is nothing else that can be done, enjoy, as much as you can, yourselves, have a wonderful weekend, make special memories.

If your mum is feeling well, then that is a really positive point. Hopefully, she will continue to feel great, and have lots of wonderful times with you.

Now, the not so nice point. Yes a lot of people who suffer from PC, are sadly too far along before its been diagnosed. That is not the exception to the rule. There have been a few people on this site, Laura for one, whose husband Bri, has been diagnosed for over 2 years now. I know it's difficult, to think the worse, especially after your Dad, but there is hope.

Much love, take care of yourself and your little ones, and try and enjoy your time with Mum.

Louie xxx

NICOLA
Posts: 41
Joined: Tue Apr 10, 2012 10:09 pm

Re: Mum just diagnosed

Postby NICOLA » Thu Apr 12, 2012 6:00 pm

Hi Fiona, i'm new to the site too, everyone on here will be a great support to you and will answer all your questions, my mam was dignosed in Feb, she couldnt have the op but starts chemo next week, i'm finding it really hard too but I'm stayin strong and putting on a brave face for my mam, I hope your mum can have the op. Im finding out new things every step of the way most of them not good to be truthful but its brought me and my mam/dad and brother much closer, no one knows how long or whats going to happen take each day as it comes and stay strong x
Nicolax

fionak
Posts: 4
Joined: Thu Apr 12, 2012 4:11 pm

Re: Mum just diagnosed

Postby fionak » Thu Apr 12, 2012 7:18 pm

Hi to you both and thanks so much for your supportive words. Louie, I know you're right about not thinking too far ahead - I need to work on this! I'm not usually a negative person but I think it's purely based on my Dad's sad experience. I know there is hope and I will do my best to focus on this.
For some reason, the consultant has now changed his mind about the biopsy and instead of carrying it out on Tuesday, wants to repeat the CT scan and do a more detailed blood analysis. The lady who phoned me didn't know why. The kind voice in my head says maybe he wants to re-think the diagnosis. And the mean voice in my head says that he thinks it's inoperable and wants to double check the biopsy is really necessary. But I'm taking Louie's advice and ignoring both the voices! Mum and I are going out to lunch and then to the theatre on Saturday and I can't wait. Best wishes to everyone coping with this devil of a disease xx

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Mum just diagnosed

Postby louiepc » Thu Apr 12, 2012 7:51 pm

Hi Fiona

That does sound quite promising, doesn't it? Have you got a date for the ct scan yet?

Enjoy the weekend, have a lovely time, and try, I know it's hard, but try and forget about pc.

take care and let us know how the scan goes.

louie xxx

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Mum just diagnosed

Postby rachelqt » Thu Apr 12, 2012 9:27 pm

Hi Fiona,
Welcome to the forum, you will find lots of support and advise here! It was and still is my lifeline when my Dad was Diagnosed in Sept 11. You have had such a heartbreaking time of it lately. So sorry to hear about your Dad and now your Mum.
With two little ones myself I understand how hard it is to keep things normal for them when you feel like your living in a different world.

As Louie has said try and take the positive out of that your Mum is feeling quite well. Just reading your last post I hope the consultants change of mind will lead to a better outcome for your Mum, bless her she has been through so much!

Hope you both enjoy your day out and keep us posted on how she is doing.

Takecare...Rachel x

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Mum just diagnosed

Postby laura » Fri Apr 13, 2012 12:05 am

hello fiona, is that your name or is it fionak?
i echo all of the previous posts, each sufferer of p.c are ,[as are the carers] differant.
you wont, i dont think, be able to get anything definate from the consultant untill he/she has the full picture, only then can they put a plan, offer options, to your mum and you.
this period of time seems like forever, i know, brian was scheduled to have a whipple in april 2010 and then his stent got bunged up, it was bank holiday and they kept him in hosp locally, and his op was rearranged for three wks later, i was very anxious, the specialist nurse attached to oncology assured me that the delay would not make any differance, we had to believe her,it was hard, however the whipple was started but once inside him, the surgeons found the tumour in head of pancreous was wrapped around superior mesenteric vein, it was deemed too dangerous to remove so some bypasses were done and stitched back up[ he jokes that he went in for a whipple and came out with piles!!!!]
however that was early may 2010, in june he started chemo called Gemcap three weeks on one week rest, he had 19 months, tolerated it well, tumour shrank after 3 months and a 2nd shrinkage after another 3 months, had 12 weekly scans since then, and we have been so fortunate that scans show no change and no mets, this doesnt stop me being very anxious before each scan, brian has had no chemo now since nov,2011 but we see our oncology team every 12 weeks and it will recommence if required. hope this may give you another perspective. stay positive and carry on with your life as usual, untill you have to change it, and well done your mum for recognising she was not so well, that can make all the differance for her, lets hope so eh! take care and love each other. love laura xx

fionak
Posts: 4
Joined: Thu Apr 12, 2012 4:11 pm

Re: Mum just diagnosed

Postby fionak » Fri Apr 13, 2012 10:44 am

Thanks so much Rachel and Laura. Laura - your and your husband's story is amazing and inspiring. What a journey for you both, I can't imagine what heartbreak, fear but also relief and hope you must be enduring along the way (I don't think I really knew the meaning of the word 'emotion' until cancer entered our lives). Thankyou very much for telling me about it.
I am having a bad day today but really looking forward to spending time with my Mum tomorrow. And then we'll just have to see what news the CT scan brings us on Tuesday. thanks again for your support, you're all in my thoughts, Fiona xx

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Mum just diagnosed

Postby Nardobd » Fri Apr 13, 2012 12:25 pm

Hi Fiona and welcome

Three years ago my beloved husband, Ted, was diagnosed with advanced pancreatic cancer. He was told probably 9-12 months but he fought so hard that I lost him only this week. Throughout most of that time he had a good quality of life - it's only been since Christmas that he had felt ill and even then we didn't realise it was nearing his time. He was rarely in severe pain and his main complaint was that he was sleeping too much!

Although he has passed away, Ted would want to continue being an inspiration to others and encourage them to fight this dreadful disease. We used to joke that he only had to cling on long enough for some scientist to shout "Eureka!".

I hope so much that your Mum's tumour is operable - it is the only current cure but if not then chemo will hopefully give her more time, maybe even enough for her to hear that scientist shout!

You will feel like you are just muddling through but everyone finds their own way of coping - Ted's was to ignore the disease as much as he could. Mine was to find out everything I could. Mostly, though, we tried to take each day as it came.

Best of luck and keep us updated as to Mum's progress.

Nicki

fionak
Posts: 4
Joined: Thu Apr 12, 2012 4:11 pm

Re: Mum just diagnosed

Postby fionak » Fri Apr 13, 2012 2:03 pm

Hi Nicki,
Thanks so much for your message. I'm so very sorry to hear of your loss but so very inspired to hear of your husband's amazing battle against this awful disease. How courageous you both must have been these last three years. Stories like yours give me a little hope that my Mum will be dealt a better hand than my Dad (and my mother-in-law who died of pc within weeks). Mum is a very strong lady, mentally and physically, and she certainly won't go down without a battle.
Your husband's approach to his illness sounds like just like my dear Dad - he refused to even say the word 'cancer', let alone acknowledge that he was suffering and made grand plans every time we spoke for "when this is all over". My Mum is much more accepting of her situation, saying "Well everyone has to go sometime". She seems so calm but inside I am sure she is in turmoil. I guess each individual has their own way of coping. I have yet to find mine, although I'm greatly comforted by the idea that when her time comes, she will be together with my Dad again. I am also greatly comforted by the lovely people on this forum; it's just wonderful to know that we are not alone and to have the chance to open up about how I really feel.
Thanks again for writing, Fiona

CFF
Posts: 56
Joined: Fri Apr 22, 2011 9:38 am

Re: Mum just diagnosed

Postby CFF » Mon Apr 16, 2012 11:41 am

Hi Fiona,

Sorry to hear about your mum - I agree with others that this is a really difficult time when you're 'waiting' and trying not to get ahead of yourself, almost trying to 'prepare' yourself for bad news but also stay really hopeful.

Will keep my fingers crossed that tomorrow goes well - do make sure that you are getting the answers you need / rationale for why they are no longer taking a biopsy etc. For me (I lost my dad last September about 2 years post diagnosis and Whipples)I needed to have all the information and good levels of communication with oncologist etc.

Most of all, as others have said, your mum is feeling well and regardless of what the cancer is doing, this is so important. For you both.

And look after yourself esp if 6 months pregnant. Don't forget to lean on husband / friends.

Cx