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Mum of 42 recently diagnosed inoperable PC


Ruthus
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Thanks all for your well wishes. Well it's a week tomorrow since I had the operation. have to say recovery is tough. I am shocked at the difficulty with moving/walking/eating and having an illeostomy for 3 months. I generally just shuffle around for a short time then flop. Finding energy to move and do things is tough. I'd welcome any advice on recovery and experiences with stages of recovery.

My feet are in support stockings and not sure how long I will wear these for. I suppose I want some reassurance that what I'm experiencing is normal. I should be having side drain out today. Then that just leaves me with illeostomy and oral pain relief.

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You are doing really well. My husband had his feeding tube in for a week after his whipples.He was released from hospital 10 days after the op. It was a slow process as he was in a lot of pain. He did everything in small steps, had a nap every afternoon. He started gentle exercise ie walking to the end of the street and then round the block after about 3 weeks.

After about 4 months he was gardening, riding his bike decorating etc all while he was on chemo too. Take care,

Hugs Jayne

x

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WifeampMum

Hi Ruth


Sorry to hear that you are finding your recovery very hard at the moment. Your body has been through so much it's bound to take a while to get over the surgery and anaesthetic.


I can't offer anything useful to share on the recovery process as my hubby didn't have an illeostomy, also his Whipple was performed in 2 stages as he had a double GI bypass last summer then had half his pancreas removed in Feb. So his surgery was quite atypical.


One resource that we've found really useful is this FaceBook Group:


Whipple Surgery Survivor Group ("Whipple Warriors")

https://www.facebook.com/groups/250497878309541/


You join by invitation - a very quick and easy process - and then post any queries. They are very friendly and supportive and there may well be members who have gone through precisely the same surgery as you.


I hope that you feel better and stronger every day.


W&M xx

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Ruth,

I think the big thing to remember is listen to your body, you have had very major surgery, and it will take time to recover, perhaps a long time but as you were so fit and well before surgery hopefully it will be shorter. When you are tired just STOP, you will be able to do a little more each day as your body starts to heal. Remember all your body's resources are going to repair the damage done by surgery, it hasn't got time to worry about being able to get around just yet, that will come later. Just take it easy and make sure you rest properly, and slowly but surely you will feel better ,every one is different and will encounter different problems as they recover so just relax and give yourself time, you sound as though you are doing amazingly well already, love sandrax xx

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Thanks all. I'm feeling more upbeat today after speaking to the doctor about a number of concerns I've had. I've had a few medication adjustments and this has helped. I'm off all pain killers now!!

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Dandygal76

Stay strong Ruth... you will get there and you will do amazingly well. You were cursed to get this horrible disease but oh so blessed to be eligible for the op. I know you don't feel that right now being so poorly but come August, when the sun is shining you will have a smile on your face again. x

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That's good news that you are feeling brighter today, but try not to do too much, and expect to have the see-sawing emotions that go with such major surgery. Off pain relief already that's fab, and its good that they are listening to you and making those adjustments, take care and let us know how you are love sandrax xx

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Just a quick update - had histology back this morning. Consultant said it was good news in that the tumour was completely removed and all 38/38 lymph nodes are CLEAR! It's classed as R1, but the Consultant said the R0/R1's have changed now and nothing in this really. He said its mainly due to tumor being 5 mm distance away but it's all out and I'm delighted no lymph node involvement. Today I am smiling

Ruth x

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Hi Ruth, so very pleased for you. Now time to recover and rest. Tracy would be so proud of you for kicking it's butt. Thinking of you always. Lots of love from us all Annette & Co xxxxxxx

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Hi Ruth,


Absolutely incredible news! So pleased for you, it sounds as though things couldn't have gone better.


Thinking of you,

Paige

Xx

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PCUK Nurse Jeni

Brilliant news Ruth!


You are doing extraordinarily well!


Will they be recommending post-op chemo Ruth, or have they mentioned this?

Great news about the lymph nodes - all around, a great decision Ruth, which I am sure you are glad you went for now.


Wishing you a very speedy recovery Ruth.


Jeni, and all the nurses.

Support Team.

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Hi Jeni


I saw the Oncologist yesterday who said the 9 sessions of Folfirinox has worked very well for me. She recommended completing the 3 remaining Folfirinox as adjuctive chemotherapy. The team are going to liase with my Consultant in the UK with regards to this. The Oncologist stated a study has shown adjuctive chemo shouldn't be started any later than 12 weeks post surgery if I'm well enough. They recommended starting it 6 weeks post op.

I said I was aware that adjuctive chemo is used but wasn't sure of how long/type of treatment which should be used. I also asked whether I should be receiving more than 3 sessions or maintenance and the Oncologist said due to lack of evidence it's a bit of an unknown. I will discuss these issues with my Oncologist back in the UK.

I am 11 days post op. I'm getting up, walking around more easily. I seem to be walking freely. My appetite has really improved and I'm eating well. I've been off pain relief for around 6 days now. My main issue is getting the output flow of the illeostomy sorted out. I've been told it takes a while for the body to adjust but the flow has been too high. We are hopefully getting on top of this with medication. I'm taking 6 Imodium, fibrous stuff to mix with water and three opiate syrup shots per day! The past few days seems to have been more settled. If it continues over the next few days I've been told I could be discharged on Friday!

Naturally I'm much more tired and have been sleeping/lying down much more. This seems to be getting easier though too. I can be inpatient and hate being to tired/inactive but am aware this can last a long time!

Thanks for all your messages

Ruth xx

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Ruth You mustn't be impatient, surely you can see the sense in taking your time now and reaping the rewards, rather than trying to do too much and perhaps delaying your recovery in the long run. My sister was just the same she had bowel surgery, I put my foot down and told her resting on the sofa was no good and she needed to go to bed in the afternoon for a couple of hours even if she didn't sleep, as like me she finds it hard to sleep or even nap during the day. She did listen and was amazed that each afternoon she had a good sleep gradually tapering it off after about 3 weeks she is older that you but her surgery wasn't as severe.

Lecture over now, I am so pleased to hear you are doing so well, and hopefully the problems with the illeostomy will be sorted out during the next few days, and you can get back home, but just remember take it easy, love sandrax xx

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