Mum of 42 recently diagnosed inoperable PC

[Guest]

Hi Ruth,

I don't think I have messaged you before. I lost my Dad last April.

I just want to say that I think you are very brave to post on here and that you reply to others to help and support them.

You seem to be doing very well, and dealing with chemo very well. My Dad used to say he wouldn't know he had cancer if he didn't know. He suffered badly with diarrhoea and if it weren't for that, his life wouldn't have changed at all.

I think to fight this horrible disease you have to be strong minded, and stick 2 fingers up at it and carry on with life as you would before, and from what I read, you do that.

Derbyshire is a beautiful area and there are some lovely walks, as you know. I briefly lived in Ashbourne some years ago.

Stay strong.

Leila xx

[Ruthus]

Thank you Leila

I am sorry you lost your father in April. Like you have said this is a terrible disease and I had no idea until two months ago! I have to keep strong and fighting.

Wishing all on the forum a Happy New Year x

[sheena]

Hi Ruthus what a strong determination you have .my husband refused to give up on anything he was diagnosed in March .it is only this last week he has had a few problems,but he has assured me it's only a knock back and he will be bouncing back up very soon. Take care x

[Ruthus]

We are enjoying the sun in Spain and are off to Valencia tomorrow for the weekend. I felt very tired on days 5-7 this 2nd cycle but feel pretty good now. We have been out cycling three times this week on the road bikes which is good. It is really strange as at times I feel completely normal and then have to remind myself I have this terrible/serious illness. I find it frightening when I read the statistics.

I know there are some who have posted on the Inoperable stories section and also on this forum who seem to have done well in managing a quality of life, the illness and surviving past the statistics. It would be so good to have more stories and posts like this! Let's hope the Governments investment into PC research makes this possible and brings better treatments and longer survival.

[sandraW]

Ruth,

So glad to hear you are enjoying the Spanish sunshine, and feeling well, bring some back for us please we could certainly do with some here its so wet and murky. Enjoy your weekend in Valencia, and take care sandrax

[Didge]

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]

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]

Ruth you are amazing you keep running and cycling! I hope you have had a lovely break.

You keep going,

Love Sue x

[Ruthus]

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]

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]

Fantastic positive update Ruth, keep it up!

Enjoy Spain!

Julia x

[PCUK Nurse Jeni]

Wonderfully inspiring post Ruth!

Wow ! Long, long may it last!

Jeni.

[Didge]

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

[WifeampMum]

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

[sandraW]

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]

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]

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

[WifeampMum]

Johncaster

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

[boa]

Wife&Mum

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

[Ruthus]

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.

[PCUK Nurse Jeni]

Thanks folks.

This has been taken care of last week.

Jeni.

[Ruthus]

I hope everyone is doing as well as they possibly can on the forum. I have just had my CA-19 marker readings after my 4th Folfirinox and they have gone from 390 at start of treatment to 280 after 2nd treatment and 96 after 4th!! I know they are only part of the picture but after 4 months of having no good news at all it's a nugget!

I have just had 5th chemo today and now sat resting on sofa in front of fire. This will be the first chemotherapy without the 5 day steroids so will be bit of a test to see how I get on. I've been given some additional anti sickness tablets so these will hopefully help and I've started having acupuncture and have been given some anti sickness wrist bands. I've managed to keep well in between treatments so far and have continued to cycle. We keep making the most of our holiday home in Spain in between treatments and just having sunshine has been such a bonus.

I've been meaning to change my car for a while now and have been looking at fiesta's. One came up with what I want color and feature wise. Interestingly the registration was CA then finished with PC!!

[sandraW]

Hi Ruth,

It must be a sign, great news on the CA19's too.

As I mentioned in a previous post Trevor didn't have the steroids and managed fine so fingers crossed you will too, he never used any anti sickness either, apart from the one time he had a bad reaction, but the consultant was convinced, as was I, that there was something else going on at the time, fingers crossed, very tightly, that you will be fine, and back on that bike. take care sandrax xx

[WifeampMum]

Wow Ruth, great to hear that your markers have gone down so dramatically - suggests that Folfirinox is doing its job really well!

I hope too that you're feeling fine without the steroids.

Take care

xx

[Ruthus]

Thanks Wife and Mum

I've been feeling pretty wiped out after this 5th chemo and no steroids. I've been sleeping a lot the past few days but this might also be influenced by being prescribed another strong anti emetic which can make feel more drowsy. I'm starting to come around again now and will see how I get on the next few days.

How are things with you and your husbands recovery?

Ruth x