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

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

Re: My mum has just been diagnosed

Postby Catherine » Mon Dec 03, 2012 10:17 pm

Thank you Jenni

My mum is coming home tomorrow, so I am sure I will be contacting the support team at some point. It all seems a bit overwhelming at the moment with so many things to sort out.

Catherine x

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: My mum has just been diagnosed

Postby Sammy-Lou » Mon Dec 03, 2012 11:19 pm

Hi Catherine,
How is your mum doing? is she back home? Did you manage to speak to everyone you wanted to in the hospital?
Sam x

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

Re: My mum has just been diagnosed

Postby Catherine » Tue Dec 04, 2012 11:06 am

Hi Sam,

My mum is coming home today. She is in good spirits and quite well as the stent appears to be working. She is looking forward to a poached egg on toast for her tea and spending time with her grandchildren later. She has invited everybody for tea - so we will see how that pans out. Mum says she'sonly eating the very best of everything so we have had a right merry dance finding the blue eggs she wanted along with everything else she needs / wants.

I spoke to various people at the hospital and we have lots of information from them. We've also asked for a Macmillan nurse to come and have a chat with us, I've spoken to her GP and arranged some other things she wanted too. I spoke to a nurse about creon again yesterday and she has been written up for a lower dose to have with snacks alongside her main dose. Apparently she wiill come out of hospital with a months supply of everything (we're hoping not fortisip as we will need a trailor to get 84 home)

We get her biopsy results on Friday following MDT (I am starting to dread that phrase) and she will get her oncology appointment then too, hopefully for next week. She has decided to have all of her treatment at the cancer centre hospital rather than our local one. Even though it's further away the care is much better and if she has to go in we would all feel happier that it is there.

So at the moment we seem to be doing ok, apart from I took the wrong clothes yesterday! But we're over that now (right ones re packed for this afternoon). For today at least we are all ok, my dad is worried about the future though and how he/we will all cope. He is 70 and it is hard for him in every way.

How are things with you? It's a strange time of year for such a horrid illness, not that there is a good time. I can't get a bit excited about Christmas. xx

AnneD
Posts: 58
Joined: Wed Feb 09, 2011 10:45 pm

Re: My mum has just been diagnosed

Postby AnneD » Tue Dec 04, 2012 1:40 pm

Hello Catherine,
I hope your mum has come home and is still in good spirits.
Yes it is hard to get excited about Christmas when you have such a lot to deal with.
Two years ago yesterday I had a Whipple and had already had a distal pancreatectomy eighteen months previously.
This left me without a pancreas and in need of Creon and insulin.
The surgeries were to remove tumours.
I came home before Christmas and pretty much sat in a chair and watched everyone do all the preparations and cooking.
Now I am about to have my third Christmas without a pancreas and life is good.
I am a year younger than your mum.
I don't know the full circumstances of your mum's illness and it will be different from mine but I'm just trying to say that if there is a possibility of surgery life can be very good afterwards.
Best wishes to you all,
Anne

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: My mum has just been diagnosed

Postby Sammy-Lou » Thu Dec 06, 2012 3:12 pm

Hi Catherine,
How is your mum doing? How was the tea for everyone? Hope you all managed to have a nice time and not let this awful disease ruin the time together.
Hope you didn't need a van for the medicines, it's quite daunting isn't it, I can only advise to get it all organised at home so it's easy to access and keep track of what was taken and when.
You'll be in my thoughts tomorrow for the biopsy results. It's actually quite a positive point in
The journey because they will help with the decisions as to what is the correct combinations of treatment to best tackle the specific strain. There may be clinical trials your mum is suitable for if she wishes to try them along side the standard 'tried and tested' treatment plans. I after about the cancer centre as feel they know what they are dealing with and have so much experience although bottom line is it doesn't matter where she is treated as long as she is confident and happy, I think that goes a long way!
I know how worrying it is thinking about how it will impact on everyone else like your dad, I constantly worry about my husband but people on here gave good advice to look after yourself so you are able to cope and then you maybe able to support those you love as well, please don't feel like you have to hold it all together, that can be a huge stressful burden. Talking to people on here or even calling the support line or Macmillan can help give you strength and information so use what is available to you!
Take care and let me know how your mum gets on tomorrow!
Sam xx

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

Re: My mum has just been diagnosed

Postby laura » Thu Dec 06, 2012 8:47 pm

hi catherine, wondering how mum, and you! are doing, mum will probably feel very tired when first home, let us know, when you have time, wishing you all well
love laura xxx

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

Re: My mum has just been diagnosed

Postby Catherine » Thu Dec 06, 2012 10:56 pm

Hello lovely people,

My mum has been home since Tuesday afternoon, she was exhausted by Tuesday night and I had to shower her and put her to bed. But we had a lovely time, the whole family came round and most people had tea. She loved it and was really pleased to spend time with us all. Especially her grandchildren. She did get her poached egg on toast all be it a bit late in the day when she was in bed.

We have had a lovely couple of days, I am pleased with how well she is doing. She's been up and dressed both days and today there has been lots of visitors that my mum has really enjoyed. It's a shame it is so icy as she was hoping to go for a little walk each day to get some fresh air and hasn't been able to yet. She's done some on line shopping today (my mun hates computers and the internet) and ordered herself some new clothes.

Apart from a little bit of lingering pain from the stent procedure she has been quite well. She was also bloated but we got some rene's and that went away straight away. I was really pleased when she ate nearly a full chicken portion tonight and as I left to go home she was tucking into a magnum mini. I've let her off her fortijuice today as she has eaten more than me!!

So far so good, I am obsessed by food and have been starving for the entire time. It seems to be all we talk about. I'm making home made meat pie tomorrow as she said she fancied that. It's quite tiring getting everything she fancies when she wants it but we are managing at the moment. My dad is fussing and is even straining the water from the kettle before he makes her cups of tea. We are all quite tense about the biopsy results tomorrow and are really hoping they have taken enough and are sufficient. Mum has been through enough prodding.

Anne, I am pleased you are living a happy pancreas free life. Thank you for taking the time to share your story. I think my mum just can't face the surgery at the moment (she's had quite a lot of operations and none of them have gone smoothly). I find it hard to understand that something 2 cm x 18mm can cause so much havoc. My mum might change her mind if the blasted thing shrinks away from the vein, I am thinking of making a model of it and shaving bits off.

Sam, its nice to hear from you. How are you and your husband coping? We have a Macmillan nurse coming next week and I am thinking of asking more about creon - my mum is on 40,000 and I am thinking she might need a smaller dose for snacks. I'm also chasing up OT.

Laura, thank you for taking the time to ask. You are an inspiration to everyone and so very very kind.

Lots of love and good wishes

Catherine xxxxx

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: My mum has just been diagnosed

Postby Sammy-Lou » Tue Dec 18, 2012 10:50 am

Sorry it's been a while since I was on. So glad your mum and all the family managed a lovely get together, your mum sounds like a very determined and strong lady. How is she now?
How are you and your dad coping?
Do send me an update when you can!
Thinking of you and your family over christmas and sending my best wishes xx

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

Re: My mum has just been diagnosed

Postby Catherine » Sat Dec 29, 2012 1:47 am

Hi Sam,

It's been a hectic couple of weeks since mum came home. We have had the Macmillan nurse, district nurse, OT imput and contact from the dietician. So far she is doing really well, she has been out and about most days and has enjoyed a family wedding and Christmas. Christmas morning was lovely, my daughter and I stayed Christmas Eve and my sister and her children came in the morning to open presents and have a family breakfast. Unfortunately I was struck down with the flu on Christmas day so I haven't been able to see her since. She has had a family party today and provided a buffet (my dad brought me some food)
My mum certainly is determined she's had her hair dyed pink and purple and has bought a whole new wardrobe of clothes, mainly sparkly and sequiny. She saw her oncologist yesterday and he is going to try an combination of gemcitabine and I think cisplatin (she wrote it down but promptly lost the piece of paper), then following a CT scan if it is responding she is to have chemo and radio together. So we are all feeling quite positive about that. The district nurse came today (my mum had had a few problems with her wound from the stent so they've been changing the dressing) and has said they will come and do her bloods before chemo so that makes it easy for her.
I feel a bit of a fraud at the moment on here as my mum really does seem better than she has done in a long time, her diabetes is more controlled for a start and other than the odd twinge from the stent she has not been in any pain. The only slight issue she has is when she needs to go to the loo she has to get there quick. The other thing that we are all really pleased about is that she has put on weight - 4lbs since leaving hospital. She is eating really well at the moment.
Take care love Catherine xx

jamescotterell
Posts: 10
Joined: Tue Dec 18, 2012 1:58 am

Re: My mum has just been diagnosed

Postby jamescotterell » Sat Dec 29, 2012 5:33 pm

Hi catherine

Good to hear your mum is in a good condition! you definitely made the right choice going to your regional speciality cancer center! we found the difference to our local hospital incredible when we did the same with my step dad. i have a bit of advice about something else that you could do as a secondline treatment if things dont go well with chemo/rad...always good to have a back up plan! ask the moderators for my email address if you are interested....it's a bit difficult to explain on here!

all the best!
james

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

Re: My mum has just been diagnosed

Postby DRAD3 » Sat Dec 29, 2012 6:56 pm

Hi Catherine
So sorry to hear of your mum's diagnosis. I lost my husband in April and am still on the roller coaster that is life with PC. Your comment about feeling a fraud struck a chord with me as I often felt the same when things were going well. What I would say is to enjoy those times but you are on a roller coaster and living with PC is hard work, physically, emotionally and very, very worrying. So glad that you find the forum helpful - it has been a life line for me.
I do hope your mum continues to feel well (my husband also suffered with severe jaundice and felt wonderful when the stent did its magic).
Take care
Deb
x

Morwenna
Posts: 50
Joined: Mon Dec 03, 2012 6:43 pm

Re: My mum has just been diagnosed

Postby Morwenna » Sat Dec 29, 2012 11:11 pm

Hi Catherine
Lovely to hear your mum is feeling well at the moment, my dad was diagnosed about 6 weeks ago and also has diabetes and was jaundice so had a stent put in, he is starting chemotherapy next week (GemCap). He is also feeling pretty good at the moment and is fairly active. I like to hear of the good days people are having on here, it gives hope to others that it's not all downhill, take care
Morwenna

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

Re: My mum has just been diagnosed

Postby Catherine » Sun Dec 30, 2012 12:56 pm

Hello everyone,

Thank you for your replies. James I will talk to mum mum but she is very stubborn and I tried to get her to consider nano knife she refused.

Deb, I'm so sorry about your husband. I've been reading your posts and your kindess to others in the midst of your own sadness is lovely. You're right about it being a roller coaster, I feel like I've been on one since October (probably in the dark with horrid things being thrown at me) and there is no way off!! Oh and every day is important - it certainly changes your perspective in life and makes you appreciate simple things like sitting and watching a bit of TV or when I stay at mums I go and sit on her bed in a morning with a cup of tea.


Morwenna, I am pleased your dad is doing pretty well at the moment. I suppose the worry at the moment is keeping them well during chemo. Good luck with the chemo, I think my mums will start the week after next so we are almost at the same point.

Lots of love

Catherine xx

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

Re: My mum has just been diagnosed

Postby laura » Sun Dec 30, 2012 11:47 pm

hi catherine, good to hear mum is doing ok at the mo, long may it continue, i see you mentioned gemcitabine [ and one ur not sure about] could it of been capecitabine, abbreviated it becomes GemCap, this is the combo bri had for 19 months and one morwennas dad is starting, it is known for usually being well tolerated, of course people are all differant, you can read bris journey if you click on my name, we are now 2yrs 10mths post diagnosis and 12 months since chemo stopped.
all the very bestr to you and your mum, and you enjoy sitting on your mums bed and a chat and a cuppa, cant beat it, and best to have no regrets,thats how i felt about my mum, she lived till 95, been dead 20 yrs now, but i always spent as much time and took her out as family permitted, i have to say i am able to live with our time together and not live with "WISHING"
love laura xx

PCUK Nurse Dianne
Posts: 302
Joined: Tue Aug 14, 2012 3:29 pm

Re: My mum has just been diagnosed

Postby PCUK Nurse Dianne » Wed Jan 02, 2013 10:01 am

Hi Catherine,

I will email you a few details re your mother's tolerance of food and urgency to go to the bathroom. Also as has been mentioned there are several different chemotherapys. It may be confusing as many people in the past have had the combination of gemcitabine and capecitabine (known as GemCap), however Cisplatin has been used in the past and is now being used by quite a few centres, often in a combination with the other 2 treatments, ie Gemcap + Cisplatin.

Kind regards,

Dianne
Support Team