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

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Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Wed Jul 13, 2016 11:36 pm

Many thanks Rachel for your helpful update and good that PrecisionPanc is able to offer some kind of service to patients. I hope we don't have to wait long for an NHS service but I'm not going to hold my breath.
W&M

Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Wed Jul 20, 2016 3:08 pm

Hello W&M,

I went back to the start of this thread and saw that it was to be about your journey. I know how hard it is to talk about how the journey affects us, much easier to write about other things but just wanted you to know that I think about you and how it is for you. I am tapping the keys with love that I hope will filter through the ether to you. M xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Jul 21, 2016 10:39 am

Dear Marmalade

Oh gosh, your post has really moved me. You're going through the hardest time with Louis and you're thinking of me, you are very kind.

How is it for me? Today, at this moment, writing this post, I am good, and counting my blessings as I should be. Compared to the majority of PC sufferers, my hubby has been incredibly fortunate. Of course, compared to non-PC sufferers, we've been dealt a pretty lousy hand but that's not something I think about very often.

I try to take things as they come and not worry about the future and most of the time I succeed. I've been practicing mindfulness meditation for the past year and this has helped enormously.

Of course I get upset when hubby is feeling rough. The roughness is usually digestive symptoms...indigestion, nausea. That's when I go into 'fixer' mode, trying different foods, routines, natural remedies. The feeling of helplessness, when your loved one is suffering and there's nothing that you can do, can be absolutely awful. Particularly if you think it might never get better.

Hubby will probably feel bad today as it's that time in his chemo cycle. But he should be feeling better by the weekend and will be able to enjoy life again. And I'm learning to enjoy life even when he is feeling bad, because life is short and feeling bad because he's feeling bad doesn't help either of us, and he really wants me to embrace life. So this afternoon I'm meeting a friend for coffee and am really looking forward to it.

Hope you and Louis are able to find some enjoyment in today, and I send my love back

W&M xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Mon Jul 25, 2016 9:35 pm

W&M.. thank you so much for the Forfirinox info. If you come across anything else I would really appreciate it.. you are better at filtering out the rubbish on the research front. I am so grateful for your input. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Tue Jul 26, 2016 10:12 am

Hi DG
I've no plans to stop posting about research breakthroughs. If you'd like me to help you find info more specific to your Dad's case I'm happy for PCUK to give you my email address so we can discuss it off-forum.
W&M x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Tue Aug 02, 2016 6:54 pm

Recent posts on various threads have touched a raw nerve.

I think it's massively difficult, as a carer of a loved one with PC, not to look back and feel that you could have done more, or should have done things differently, in order to keep them with you for longer or make things easier for them.

At a recent oncology clinic, I told hubby's oncologist that I didn't want to live to regret opting for a particular treatment pathway. She replied with a comment that upset me for weeks afterwards. She told me that however she treated him I would probably end up beating myself up about it. And therein lies one of the difficult truths about PC - it is such an individual disease, and so little is understood about it. Therefore the medics have little or no idea if a treatment will be successful, or how long it will be successful for, so we can't rely on them to advise us. We're all scrabbling around in the dark.

For example, there's the million dollar question of quality over life versus quantity of life. Most PC sufferers and their carers reach the point where a particular treatment has stopped working and they have to decide whether to try further potentially life-extending treatments or embark on the purely palliative route. This is an incredibly difficult decision to make, as sometimes changing to a different treatment extends life, and improves the quality of life considerably, but it can also shorten life and/or make it more miserable. We just don't know, and nor do the doctors.

This all goes to show that no loved one should feel guilty over the decisions made on the PC journey. We can take medical advice from one or several sources, we can rely on research that we've found or the experience of others, we can trust our instincts or the instincts of the patient. All of these are valid criteria. And then all we can do is hope and pray for the best.

W&M x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Tue Aug 02, 2016 7:22 pm

Agree with you 100% W&M. There are no right and wrong choices when dealing with PC... we are all just feeling our way through the darkness. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Thoughts from the PC frontline

Postby Proud Wife » Tue Aug 02, 2016 7:58 pm

Gosh what a great post W&M and so incredibly true. However posting with raw emotion today my head is arguing with my heart. I go from thinking whatever happened was the way it was meant to happen and we did our utmost but in bleaker times, then I can start thinking well if he did this or did that, would he have been here longer.

The truth is, we will never know.

Purely out of interest then, are you saying that something like breast cancer or prostrate cancer follows a similar path and decisions are far easier?I've not looked into any other cancers and I hope I never ever have to again in my lifetime!

But as I said before W&M you have summed it up in a nutshell xxx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Tue Aug 02, 2016 8:57 pm

PW, sadly I think understanding of how to treat PC is still in the dark ages compared to other cancers like breast and prostate. Because more is known about these other cancers there is less guesswork on the part of the clinicians and they can better guide the patients and families over treatment pathways. Also because they're less aggressive cancers, there is more time to make decisions. Because of the (generally) better outcomes, the decisions aren't so scary.

But I certainly don't think these other cancers are a walk in the park.

xx

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: Thoughts from the PC frontline

Postby PCUK Nurse Jeni » Wed Aug 03, 2016 11:52 am

Hello W&M,

Can I reiterate what the others have said regarding your post - it is a very concise and balanced "overview" of the pathway relating to pancreatic cancer, both as a patient and as a carer.

I am sorry to hear that you were upset by the comment made by the oncologist - however, you have put your thoughts down on "paper" as it were, and have also had some very good views surrounding the decisions people have to make.

I think in all cancers, the decision you refer to around life-extending treatments or palliative care, does come to each patient who has carried on the route of chemotherapy for considerable time. At some point, in the majority of cases, there will come a point when this decision has to be made. You are right in saying that more is known about other cancers, but also, the crucial thing is that there are (often) more treatment options in these scenarios. Such that, the decision referred to above could be coming after 4/5 different treatment options, which could be a variety of things (chemo, radiotherapy, monoclonal antibodies, hormones - amongst some).

With pancreatic cancer, there is a lot of research looking into why it is so hard to treat, why it is not so responsive to chemo (at times), and where there are keys surrounding tumour cell biology - potential keys to unlock the answers to some of these questions. But, you know, research related to PC is behind counterparts such as breast/bowel etc....

However, what can be said, is that in the past few years, progress has been made - in 2010, folfirinox wasn't even being used (although of course the drugs existed in different combinations for bowel cancer). Abraxane was not being used - although existed in breast cancer. And so on.

Thank you for summing up the challenges from a personal and also, wider perspective.

Jeni Jones.
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Thoughts from the PC frontline

Postby Proud Wife » Wed Aug 03, 2016 12:30 pm

Hi Jeni

Thank you for your post too. This is a very interesting thread for me.

As you probably know, I am in the bottom of the class understanding the whys and the why-fores of pancreatic cancer.

However, one point I know only too well is that because of where the pancreas sits in the body, by the time symptoms are displayed, the cancer is normally advanced or very advanced as was the case with my hubby.

Even if treatment options improve and Folfirinox, Gemcitibane with or without abraxane are replaced with more effective treatments, how is earlier detection ever going to be improved, realistically? To me personally, that's just as if not more important or do I see that wrong?

Love PW xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thoughts from the PC frontline

Postby Veema » Wed Aug 03, 2016 9:04 pm

I think early detection really is the key here...our GP was great in that as soon as Nige went and stated his symptoms, he was in for a scan and it was found asap - I know we were lucky in that respect and pancreatic cancer is often thought to be other things initially from the symptoms that are displayed and some GPs fail to pick it up at all.

What we were told when he had his whipples was that he'd probably had it for about 2 years before any symptoms at all had manifested themselves...how on earth are we going to have early detection unless there becomes some sort of routine screening like there is for bowel cancer in the over 60s, cervical cancer or breast screening etc.

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Thu Aug 04, 2016 7:55 am

W&M - just another example of how decision making is so problematic with PC. We are told on one hand to eat healthy, reduce dark meat and leave out processed foods and we work hard to stay organic. Then I do a search of the last 7 days PC news and look....

http://medicalxpress.com/news/2016-07-d ... cells.html

So what do we do now? Are the health measures we put in place not the correct way for PC? We are damned if we do and we are damned if we don't. xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Aug 04, 2016 9:55 am

DG, yes, it is all so confusing. With this news about antioxidants being bad for PC I'd drop any antioxidant-rich food supplements but stick to a healthy, balanced diet from natural foods.

I actually took this as a good bit of news, as its another piece in the jigsaw of understanding what feeds PC and will hopefully lead to new treatments.

xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Thu Aug 04, 2016 10:13 am

The problem is curcumin and bitter melon are deemed antioxidants but these have also proven beneficial in the fight against PC in other studies at high levels. It is very difficult to figure out the best way forwards on these things. I really can understand why people just stop reading this stuff like my sister - I can see the benefits of no knowledge sometimes and just increase your quality time. x