A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: Diagnosed December 2nd & still waiting for help

Postby Catherine » Sat Feb 02, 2013 12:29 am

Oh Linda bless your heart. How did MDT go? Apart from your morale how are you feeling in yourself? Take that as your marker and each day as it comes - and enjoy each day. No one knows what is round the next corner of life, for any of us. I spent the first 2 months of my mums diagnosis so focussed on the illness, her imminent death and trying to enjoy her while she was here that I forgot what was important - my mum as a person. In spite of being very poorly while she was in hospital my mum is now doing great on chemo - probably the most well she has been in ages. The last few real life stories on this site have been inspirational, try not to focus on the doom and gloom and focus on you and doing something every day that makes you smile. This disease takes over peoples lives, in every possible way, my favourite thought at the moment is my mums a person not a diagnosis.

Lots of love Catherine xx

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Diagnosed December 2nd & still waiting for help

Postby LindaH » Sat Feb 02, 2013 3:20 pm

Catherine wrote :
> Oh Linda bless your heart. How did MDT go? Apart from your morale how are
> you feeling in yourself? Take that as your marker and each day as it comes
> - and enjoy each day. No one knows what is round the next corner of life,
> for any of us. I spent the first 2 months of my mums diagnosis so focussed
> on the illness, her imminent death and trying to enjoy her while she was
> here that I forgot what was important - my mum as a person. In spite of
> being very poorly while she was in hospital my mum is now doing great on
> chemo - probably the most well she has been in ages. The last few real life
> stories on this site have been inspirational, try not to focus on the doom
> and gloom and focus on you and doing something every day that makes you
> smile. This disease takes over peoples lives, in every possible way, my
> favourite thought at the moment is my mums a person not a diagnosis.
>
> Lots of love Catherine xx

Bless you Catherine, thank you for all your good wishes. It never ceases to amaze me how people who have such busy lives, take the time out to wish others well, it is so, so apprecaited. Thank you
Linda xx

carmel
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

Re: Diagnosed December 2nd & still waiting for help

Postby carmel » Sun Feb 24, 2013 10:50 am

Hi Linda
I have just picked up the thread and am wondering if you have made any progress towards finding out your treatment options. I went through the same thing with my dad who was 82 at the time. I was not getting anywhere with the doctors or staff at the hospital and there was MDT meeting after MDT meeting so I became their worst nightmare, I contacted PALS which seemed to speed up the process. Sometimes it is better to demand to see people face to face as they hind behind their desks, (or they did when they saw me) :lol: so take heart. My dad who was given 3 months was given the whipples and 2 years on he has a new lease of life at 84. I hope this story uplifts yopu slightly I know exactly what you are going through as do other people on the site. The site was my lifeline when my dad was ill. Best regards to you

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Diagnosed December 2nd & still waiting for help

Postby PCUK Nurse Jeni » Mon Feb 25, 2013 5:38 pm

Lovely to hear from you Carmel! great to hear about your dad! Some good news! How lovely.

Jeni.

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Diagnosed December 2nd & still waiting for help

Postby LindaH » Tue Feb 26, 2013 1:39 pm

carmel wrote :
> Hi Linda
> I have just picked up the thread and am wondering if you have made any
> progress towards finding out your treatment options. I went through the
> same thing with my dad who was 82 at the time. I was not getting anywhere
> with the doctors or staff at the hospital and there was MDT meeting after
> MDT meeting so I became their worst nightmare, I contacted PALS which
> seemed to speed up the process. Sometimes it is better to demand to see
> people face to face as they hind behind their desks, (or they did when they
> saw me) :lol: so take heart. My dad who was given 3 months was given the
> whipples and 2 years on he has a new lease of life at 84. I hope this story
> uplifts yopu slightly I know exactly what you are going through as do other
> people on the site. The site was my lifeline when my dad was ill. Best
> regards to you


Thank you Carmel and so lovely to hear about your dad.

I start Chemo this Friday and though I may never be able to have the Whipples operation (though never say never) I hope I will be able to gain a few more years.

Linda x

carmel
Posts: 29
Joined: Sun Feb 13, 2011 12:45 pm

Re: Diagnosed December 2nd & still waiting for help

Postby carmel » Tue Feb 26, 2013 5:29 pm

Hi Linda.
That's great news.
Another step forward. Onwards and upwards.
Hi Jeni, nice to hear from you best wishes to all.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Diagnosed December 2nd & still waiting for help

Postby Slewis7313 » Sat Mar 16, 2013 8:59 am

Hi Linda, I was contemplating all the positive messages on my thread and in particular from you. The penny then dropped that I had not fully read your threads, but now have. To be honest I feel a little guilty as I now see that you have had a real fight to get to the point of finally being treated. I certainly hope your chemo is working as I noticed positive results during the first cycle (I am on a 4 weekly cycle of Gemcitabine and Cepecitabine). Whilst the chemo sessions are pretty straight forward and only last an hour in total, I still dread them though i am not sure why (I thought I was hiding this dread, but my wife can read me like a book and apparently suffers with me on these days). At the last one, the lovely tea and biscuits lady from the Red Cross suggested I should try a smile whilst I was sitting waiting for my turn. Couldn't oblige I'm afraid!
We will no doubt be able to compare notes as the year progresses, but to fill in a few more similarities, we have 2 daughters Holly aged 26 and Paige 22. The youngest lives with us along with her partner. She is studying at swansea university and is due to graduate in the summer. She was my immediate concern when they hit me with the diagnosis, as I feared she would be so distracted that her studies would suffer and I at the time doubted I would be at her graduation. She is however doing well and I am certain I will be at her graduation and beyond. Those early days of diagnosis really are difficult to deal with. Our elder daughter works in the Pharmacy at another Hospital and has been a rock, pestering when needed and asking all the right questions. She is the one who made the initial contact with PCUK, for which I cannot thank her enough. Our Oncolgist visits are like a family outings as i take my wife, daughters and at usually one of their partners.

Please let me know how the chemo progresses.

Take care

Steve

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Diagnosed December 2nd & still waiting for help

Postby LindaH » Sun Mar 17, 2013 3:53 pm

Now Steve, I see you're from the lovely Swansea, but please tell me you support our lovely Welsh boys who won the Six Nations yesterday? I love and I mean LOVE the Wales Rugby team and even though the only time I visited the Mill Stad was to see U2 in concert, my aim is to see Wales v New Zealand play at the Mill Stad one of these days :D .

Yes Steve, it was a bit of a struggle trying to get treatment from my hospital. Some of it I suppose I can put down to the fact that my tumour is a rare kind - Squamous Cell Carcinoma, so the team were slightly baffled, but like I've said in other posts, when I had my breast cancer, I couldn't move for consultants and Macmillan nurses falling over themselves to help me....PC...well...it was a case of 'You're on your own mate'.

My first chemo - March 1st, was awful. My body didn't know what on earth had hit it, but now the second session - March 8th wasn't quite as bad. My problem is my tummy...I bet you can hear it down in Wales. It gripes and gripes and drives me mad. It takes me ages to get it to settle down. I don't look forward to the sessions, well who can really, knowing how it's going to make us feel the days after. Smile....I try. People say "You look so well"...."Keep going girl" and so much encouragement ...well I'm amazed really, but Steve, unless you've had chemo, you haven't got the slightest idea what it's like and how awful it is...so I smile and thank people, because deep down I know they care and I am so very grateful when someone says..."You look good", when my hair is a mess, the colour of my face is battleship grey and my head is in a bucket throwing up.....

I hope and pray we both come through this Steve I really, really do not only to say "LOOK YOU B*STARD I'VE BEATEN YOU", but for our loving family who feel all our pain. My darling hubby couldn't stop crying when we were told. My daughter - God bless her - never let me see how she was truely feeling.

My daughter - Natalie, as I've said is 21 and like your daughter is studying at uni - York, so of course we want to see them graduate, it's our God given right Steve. Thank goodness we have such caring loving families.

Our visits are the same at the consultants, we all crowd in, even though it may only be a quick check-up, but that's what this does Steve, it affects us all as a family.

PCUK has been a life-line to me. Just to write things down, to talk, to blog, it all helps and people on here are the salt of the earth.

Yep, we're going to fight this battle Steve and we are going to kiss goodbye to Pancreatic Cancer, come out the other side a bit shattered, but with every single ounce in our bodies we will do it.

Take care and please keep in touch
with good wishes to you and yours
Linda
Last edited by LindaH on Mon Mar 18, 2013 10:19 am, edited 1 time in total.

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Diagnosed December 2nd & still waiting for help

Postby DRAD3 » Sun Mar 17, 2013 5:44 pm

Linda and Steve, you are inspirational, wonderful, amazing...I cannot find the words but I admire you SO MUCH. You will be lifting everyone's spirits with your posts, I can assure you. Keep up the fight - we are very much behind you.
lots of love
Deb
xx