Feeling robbed.

[Essee11]

Hi everyone.

My dad has stage 4 pancreatic cancer and I struggle so much at night times. I’m fine and happy ish through the day then a wave of sadness hits me and stays for hours

Dealing with this during normal times must be horrific but I can’t help but get so angry about my dad being robbed of normality because of this stupid virus. What upsets me the most is I constantly think about what it must be like to have a funeral amongst this for a sociable man with hundreds of friends and being robbed of that. Does anyone else have these feelings

[Vasil]

Hi Essee. My father has the same diagnosis as yours but is under chemo. Does your Dad have chemotherapy. They say it can slow things down for a while.

[Essee11]

Hi vasil

Yes he is also having chemo but can only have up to 12 rounds. He has round 3 last week and has it every other week. What about your dad?

[Vasil]

Hi Essee and thanks for your reply. It is the same with my father, up to 12 rounds because this regimen is very toxic (Folfirinox). My father's had 10 rounds so far but is feeling very exhausted and losing weight. How about yours? Dear Essee, the prognosis for this stage is not good but I try not to think about it. Chemotherapy does bring a temporary remission. How is your father tolerating the treatment?

[Essee11]

That’s the same type as my dad. First 2 rounds didn’t go well but they have now taken something out and he managed much better last week. When was you’re dad diagnosed?

My dad has lost around 3 stone, thankfully he was 15stone when he was well. He always has sickness feeling so really struggles to eat.

X

[Vasil]

Hi Essee. My Dad was diagnosed in early July this summer. Started chemo straight away. He has appetite and eats well. I also bought some enzymes and herbs for him but still losing weight. Lost 20 kg since the time of diagnosis which equals to 3 stones I think. We are hoping that once chemo is over he might regain his weight.

Please write to me, we seem to be in a similar condition. Best regards.

[Essee11]

Sounds like your dad is doing quite well considering. My dad is really wanting to fight this but the nausea feeling constantly gets him down.

He had to have bypass surgery in October due to the cancer blocking his intestines and since then his appetite has been bad. Really frustrating because til that point he was eating really well.

[Vasil]

Dear Essee, I believe nausea is a common side effect of the chemo treatment. My father does not have nausea but is experiencing extreme fatigue and has to be in bed most of the time. But once the treatment is over things will be better. You will see. We have to be strong. Yours, Vasil.

[Essee11]

Yeah really hope he gets some quality of life after this and I hope the same for you’re dad. Best wishes x

[Support Team]

Dear Essee11 and Vasil,

My name is Lynne and I am one of the support line nurses.

I am so pleased to see that you are finding the support you need on the forum. Often just speaking with people who are going through similar things can be so helpful.

You both mention that your family members are having some side effects from treatment and possibly some digestive symptoms related to pancreatic cancer. If you would like any advice or support in managing side effect or if you want to chat through anything at all please don't hesitate to get in touch with us on the support line.

You can do this by dropping us an email at, nurse@pancreaticcancer.org.uk

or call on free phone 0808 801 0707, this is open Monday - Friday 9-4, except Wednesday when its 10-6

Kindest Regards,

Lynne

Pancreatic Nurse Specialist

[Borobi]

Night time is the worst. I spent months being awake at 4am dreading what was to come. My husband died just before lockdown so he had a small funeral - many friends couldn’t travel and we couldn’t have any wake at all. But it really doesn’t matter. We’re going to have 2 massive wakes when all this Covid mullarkey is over (one for the ashes scattering and one local). Hopefully your dad will outlive Covid, but if he doesn’t you can still have a good funeral. Try and focus on now and not what’s to come.

[Essee11]

Hi borobi. So sorry to hear about you’re husband, how are you managing coping now? Really hope you are ok.

Yes I found it very difficult when I first learned of my dads diagnosis but I am better now at taking it day by day and pray that he outlives COVID like you say.

I also really struggle on evenings I cry for sometimes hours at a time. When I start I can’t stop.

[Vasil]

Dear Borobi, I am so sorry about your loss. Was your husband diagnosed with Stage IV? Sorry for asking this might be painful to you. The problem is I have googled the statistics. It says median survival is 11 months only. This knowledge is killing me but as you've said we should focus on the "now". In some cases patients can live two three or four years. Unfortunately this rarely happens. Sometimes I wonder whether this statistics is true. Maybe it isn't.....