Hello & Thank You

[rustie22]

My mum was diagnosed with PC 3 weeks ago & in that short time I have learnt so much about this horrible illness but also gained so much strength & inspiration from those that are using this site

We have Mums MDT Meeting on Tuesday & all I know so far is that the tumour is in the tail, with a secondary metastases near the liver

Mum remains completely oblivious to all of this. Denial, shock, I just don't know. But, believing that she can be completely cured by the Doctors

How do I shatter her illusions, what do I ask the Team, I just don't know. Trouble is that because she is so positive, so is my Dad because he believes what she tells him .

Can anyone she some light on what I should be asking - I already have a load of questions after doing loads of research, but are they the right ones?

Thanks to all the posts that have helped me so far. With the knowledge I have gained I just hope I can do the right thing for Mum

[suef]

Hello Rustie22,

Welcome to the forum. You will get a lot of support here, as well as practical information. There is a section on the website with lots of questions you can ask at the MDT meeting:

http://www.pancreaticcancer.org.uk/information-and-support/just-diagnosed/questions-to-ask

I hope they will be helpful. As far as your mother & father are concerned, perhaps you can 'play it by ear', just go along with what they believe and stand by to support them when needed. And, importantly, take advantage of every opportunity to be with them and create happy memories.

I wish you much courage. We will be here for you!

SueF

[J_T]

Hi Rustie, sorry to hear of your mum.s diagnosis.

Some good advice from Sue. If your mum doesn't want to know the details that's fine, her choice. Just be there for her and we'll be here for you.

Take care,

Julia x

[jacqui]

Hi Rustie..so sorry to hear about your mum. It's the most awful news and the worst time imaginable. I starting grieving as soon as my mum was diagnosed but that was last July ..I thought we would only have her for a couple of months but she's still going strong and on her 7th cycle of chemo next week. I will say though, that she also thinks she may be cured and I believe that this has what has kept her strong for so long. We talk about possible holiday destinations, buying clothes for such trips and even what we'll do for my 50th next year. I know in my heart that it is highly unlikely she'll be around then but no one can predict the future and if she is happy and positive then who am I to take that away from her? I go with her to her appointments but don't ask questions because I know that if my mum wanted the answers then she would ask and any questions you may have, you can ask here on this wonderful supportive site. Take care but continue to smile and laugh with your mum and dad when you can xxxx

[rustie22]

OK, so that's the Meeting out of the way. Main tumour is 8cm long with 3 secondaries in the liver. Think the Doctor was glad to get rid of me I asked so many questions.

Mum been offered Gem as Chemo, wont give the Cap part as too strong for her, don't know if that's good or bad news. Creons to follow as required.

Just really feeling the pressure of being back home now, 250 miles from them, its not as if I can get down there all the time. When I see her in 4 weeks time the Chemo will have started. Saw such a change in her in just 2 weeks, what will we see next time?

Mum has decided not to know the outcome, but obviously I have a vague idea, just so hard to stay focused.

Will be moving down to be with them & taking extended leave from work in about 6 months, so just counting the days until then

[J_T]

Hi rustie, its good to ask questions! Not that I'm an expert but I've hear gemcitabine is well tolerated.

Must be hard being so far away but I'm sure you will be in contact one way or another. Do keep posting, someone will always be along to 'talk to'.

All the best

Julia

[Cathy]

Hi Rustie

I agree with Julia. Don't be afraid to ask questions. You don't get told everything you might want to know. Does your Mum have a keyworker, someone you can contact if you need to talk or get more information?

Whilst you are waiting to move to your parents you might want to (if you haven't already) see what support you can get for yourself as well locally to you? This could be through your GP, Macmillan nurses or even your employer?

Fingers crossed your Mum starts to feel better once chemo starts.

Thinking of you all

Cathy xx

[KATB]

Hi Rustie,

The nurses on this site are truly amazing - you can always pick up the phone and talk to them or send them an email and they will respond with as much information as you would like. We've only been on this road for 2 months and we have found them absolutely invaluable for filling in the blanks that maybe the oncologist doesn't.

Thinking of you,

Kate

x

[rustie22]

Why does this illness hit so hard & fast?

Mum so positive to start Chemo today & then, bang, she gets an infection & the hospital refuses it as she is so weak. Dad not really taking in all the details so I not sure if Ive got the whole story. No-one else to call as she has refused a Macmillan at the moment

We are only a few weeks on this journey so I don't really know if she should be sleeping as much as she is, or be in as much pain. Appetite is dwindling fast - 6 chips for dinner the other night!! She has apparently been given some Actimel type drinks to increase her energy levels, does anyone know what these are?

[KATB]

Hi Rustie,

How frustrating that the infection came along to delay chemo. If your mum can get onto the chemo this should make her feel better. My dad was the same before chemo started - struggling to eat, no energy, sleeping a lot and he had a lot of pain and discomfort. He had his first chemo and he was knocked out for a while afterwards but then he felt better - his pain went, eating normally again, not sleeping in the day etc. Fingers crossed your mum can get started on chemo once the infection is sorted.

I think the drinks you refer to are probably Nutrisip? They are a drink in a bottle, a little bit like the Actimel but bigger, and they have around 300 calories in each drink. Dad was drinking these a lot before chemo started but since he's now eating better he's not using them quite so much.

Kate

x

[J_T]

Hi rustie

Yes, I know what's its like when events prevent things from going along the set path but try not to be disheartened. My husband (KATB's dad) had to miss his scheduled second cycle of chemotherapy because he was hospitalised with acute pain - due to stent problems we think. He rallied from that and got his second blast yesterday (he's on Folfirinox).

Has your mum got any pain medication? She should have. Ray is on slow release morphine and paracetamol, plus Oramorph if he needs it. As KATB has said, his discomfort disappeared pretty quickly after the first chemotherapy but we keep up with the pain meds 'just in case'! Macmillan are REALLY good, there is no doom and gloom and they are excellent at managing pain. If your mum can get this under control it will help her very much and as a knock on, it will help the family too.

The drinks are Fortisip and Fortijus they are useful when appetite is low, we have a cupboard full!

I hope you can get your mum to get the help she needs.

Best wishes

Julia

[J_T]

Also it does help both the patient and the family when someone seems to be doing something, ie Macmillan with pain control. She will take time to talk with you all so she knows exactly what is going on. We always feel much better after meetings.

[PCUK Nurse Dianne]

Hi Rustie,

Great that you have found this forum and a new 'family' to share this journey with. Please do feel free to contact Jeni and I on the support line if we can help answer any questions in more depth, or clarify any information you may wish to discuss.

The support line is open 10-4pm on Monday to Friday, and you can contact us by phone: 020 3535 7099 or by email: support@pancreaticcancer.org.uk.

This service if free of charge and there is no limit to the amount of times you can utilise it.

Best wishes,

Dianne

Support Team.

[rustie22]

Thanks JT, Mum is on Oramorph & is now preferring that to normal painkillers due to the gagging reflex she has when she tries to take tablets.

She has had to have blood transfusion today as haemoglobin levels very low & was vomiting black blood which was diagnosed as an internal bleed. Its so frustrating that this again will delay her first Chemo session. Everyone that needs Chemo needs it because they are ill, but you have to be in reasonably good health to have it. So ironic!

Anyway, onwards we go & lets hope all will be OK for next week. Just feeling really stressed & cross at the moment & felt like I needed to sound off.

[J_T]

Here's the place to vent rustie! I don't blame you either, your poor mum, that sounds nasty. fingers crossed she picks up soon and gets her treatment next week

Julia (JT)

x

[Cathy]

Hi Rustie

It must feel terribly frustrating for you. It's such a terrible irony (as you say) that she can't start the chemo to make her feel better as she is poorly. We've all got our fingers (and toes) crossed that your Mum picks up and her chemo can start without any more delays.

Cathy xx

[rustie22]

Well I guess this could be the last time I log on here. The past 6 weeks have been absolutely horrific. Mum was admitted into a Hospice for a break & was in there 2 weeks, when she came out I realised that her right leg was swollen - DVT diagnosed. Then she lost control of her bowels & it meant that she went back into the Hospice where C-Diff was suspected. She lost her battle with PC on 21st June, just 11 short weeks after her initial diagnosis. We had her funeral today. For those of you on the journey with PC I wish you all good luck. I am now going to look into help campaigning for more research into this horrible disease & hope that we can improve the survival rate - how can this be the only cancer to have only a 3% success rate & to have stayed at that for over 40 years. It has claimed so many high profile victims: Patrick Swayze, Pavarotti & Magnus Magnusson to name a few, that more needs & must be done. Thanks to all the support given me in the 3 months I have been using this site - my thoughts are with you & your families.

[KATB]

Oh my goodness rustie I am so, so sorry.

Take care of yourself.

K

x

[J_T]

So terribly sad to hear of your mum's final days. My heart goes out to you.

Take care. xxx

[PCUK Nurse Jeni]

Hi Rustie,

I am so very sorry to hear about the recent death of your mum.

I would like to offer my condolences, as well as those of the wider charity.

Thank you for posting, and I wish you and your family all the best in the future.

Kind regards,

Jeni.

[jacqui]

Hello Rustie, I am so so sorry to hear about your mum and too soon after your first post. My thoughts and prayers are with you and your family. I wish you all the best with your campaigning but it is sad that it has to be done ....it shouldn't be necessary!

Love and hugs, Jacqui

[LindaH]

Hi Rustie,

You are so brave sharing your mum's story with us, thank you so much.

I wish you well.

Linda xx