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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Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Didge » Sat Jan 09, 2016 3:40 pm

Ruth, you are doing so well and cycling is something which would tire most of us 'healthy' people, never mind someone having tough treatment for a tough disease! I did go to a wonderful conference in November on pancreatic cancer research and it was fascinating that there are a number of things in the pipeline so the longer you can keep going, the more chance that new things will come along in time! Enjoy your weekend in the sunshine! Didge x

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Sun Jan 10, 2016 10:51 am

Thank you Didge. I have actually just run Valencia 10K with my family. It was a lot slower than I usually run but finished in 1.19! I feel so normal it's difficult to comprehend I have such a serious illness. I am hoping I can just keep going!

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Sueoliver » Tue Jan 12, 2016 11:02 pm

Ruth you are amazing you keep running and cycling! I hope you have had a lovely break.
You keep going,
Love Sue x

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Mon Jan 25, 2016 10:18 am

Quick update. I'm in Spain again at our lovely family place. Weather amazing. I feel remarkably well after 3rd Folfirinox,.. Not sure if that's a good thing or not! We went out on road bikes yesterday and I rode furthest yet, 47 miles! I am trying to just enjoy and not worry/project into future too much. I have no idea what this thing is doing inside me and have to accept this unknown. For now I feel strong and positive. I find it difficult to read many of the other threads so forgive me for not posting but my thoughts are with you.
Ruth x

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Proud Wife » Mon Jan 25, 2016 10:31 am

You are doing amazingly well Ruth, my hubby just finished his 12th cycle of Folfirinox and so far so good, we are able to carry on just as normal. He's advanced stage 4 but you just wouldn't know it. We too tried to have a break between each cycle - I called them our "get fit and fat" breaks to help him cope with the chemo ahead. It did the trick!

It most certainly is a good thing that you feel so well! I'm sure that will continue for you as it did for my hubby. He breezed through treatment.Just keep positive and keep fighting. You have enough on your plate without posting on other threads so don't even apologise. Just enjoy that spanish sunshine and don't forget to bring a bit of it back for us!!!

Take care xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby J_T » Mon Jan 25, 2016 11:56 am

Fantastic positive update Ruth, keep it up!

Enjoy Spain!

Julia x

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Mon Jan 25, 2016 12:10 pm

Wonderfully inspiring post Ruth!

Wow ! Long, long may it last!

Jeni.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Didge » Mon Jan 25, 2016 2:18 pm

Lovely to hear from you Ruth but no pressure to post more than you want. Sometimes you just want to forget about it for a while! xx

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Mon Jan 25, 2016 3:27 pm

So pleased you are feeling well and positive, really lovely news. Keep on enjoying! Wife & Mum xx

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Mon Feb 15, 2016 8:59 pm

Hi Ruth,
I noticed you had posted on one of the other threads about taking the steroids, and that you felt they were upsetting you.
When my husband Trevor was on Folfirinox his blood sugars rose dramatically, so the oncology consultant firstly stopped the steroid tablets, then after another treatment when his blood sugars went up again he stopped the infusion of steroid, into the line before treatment, too. Trevor managed really well without them he was tired on day 5, more tired on day 6, and on day 7 he usually napped for the best part of the day, but still managed to eat normally. He usually woke on day 8 feeling almost back to normal, until the latter stages of his treatment when it took him longer to bounce back.
I know your problems are more mood related but just wanted to let you know it can be done. I hope you are enjoying Spain take care sandrax xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Tue Feb 16, 2016 11:59 am

Hi Sandra

I have spoken to my link nurse and also had an email from Jeni at PC, both of which have been incredibly helpful. The upshot is that I am stopping taking the steroids. Physically I have been very well. After my recent 4th chemo my mood has been so badly effected by the steroids that it really is not worth taking them. I already feel alot better psychologically after not having them in my system for the past day.
I will have to see how not having the steroids effects me physically next time but I would prefer to do this than endure another 4 days like I just have.

On a posiitive note, I am physically very well. We walked Edale the other day and this actually turned out to be a significant rock climb. We are off to Spain again on Friday and having just short of a week there with my family to celebrate by son's 21st. I am looking forward to some sunshine and getting out on the road bike.

Ruth x

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Proud Wife » Thu Feb 18, 2016 5:59 pm

Good call Ruth.I'm interested to hear if it makes a difference. On a sunnier note, have a wonderful time in Spain, I'm sure it will do you the world of good and please wish your son a very happy 21st Birthday! Bring some sunshine home with you if you can. Enjoy xx

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

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Sat Feb 20, 2016 9:50 am

Johncaster
All your posts appear to endorse a health tourism company. I don't think such posts are allowed on this forum.

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby boa » Sat Feb 20, 2016 12:42 pm

Wife&Mum
Agree with you. Johncaster posts are unhelpful and are just advertising a health tourism company. I hope they stop.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Sat Feb 20, 2016 2:58 pm

Thank you for your advice John but I am already having treatment with a centre and Comsultant who have an excellent reputation and I trust them and the treatment decision. Of course I will be open to researching all that is available to me following my mid treatment scan in March but my decisions will be based on evidence based research or reputable places.