Hi Neil

You need to stick to a low 'residue' diet, fibre is not absorbed into the body and remains a residue in the gut.  I'll give you some examples.

Any meat or poulty, cooked in any way without visible at and with skin removed.

Fish without bones. Seafood (ensure shrimps and prawns are peeled)

Plain tofu, eggs, quorn, textured vegetable protein (TVP)

Mill (all types) butter/margarine, cheese, custard, yoghurt/fromage frais/mouse, ice-cream, cream, creme fraiche, yoghurt drinks.

Fruit juice or smoothies (no bits) cooked or stewed fruit without skins, tinned peaches, pears and apricots, pureed fruit and fruit coulis

Vegetable juice, well cooked peeled root veg, eg. swede, carrots and parsnip, tomato (flesh only) no skin or pips, passata, tomato puree

Smooth pureed/mashed and well cooked beans and lentils without skins, e.g humous, lentil soup

Potatoes (cooked - boiled, roast, mashed without skin), white bread or rolls, breakfast cereals, white flour products.

Fruit squash, fizzy drinks, strained fruit juice, tea, coffee, milk drinks, alcohol (yes i did say alcohol)

Tinned soup, chocolate, seedless jams, rindless marmalade, toffee, chewy sweets.

Try and keep away from veg, whole grain bread and with seeds, cabbage, onions, leeks, lettuce and salad leaves, sweetcorn, broadbeans and raw veg, Don't eat dried fruit, fresh grapefruit or pineaple and mango. Strawberries, raspberries, blueberries, blackcurrents or gooseberries

I just tended to eat chicken with mashed potato and mashed swede and carrots. I had ice-cream, custard all that sort of stuff. I did eat some sliced potatoes once and was in agony so I just stuck to the boring stuff. I did have the odd glass of wine and gin and tonic every now and then and that definitely helped.

I hope this is useful to you, you can always google low residue foods too.

Denise

Hey there!

That was PERFECT! You gave me everything I was trying to decipher from all the do's and dont's I found on tinterweb.

It all seems so manageable as welll. You hear about all these life saving diets that are near impossible to produce, let alone shop for lol.

Thank you so much. I have the big reveal with the oncologist tomorrow to see what I'm facing.

All the best Denise. I'm in your debt, because your help and advice has been such a comfort.

Neil x

Hello Linda,

                    l was diagnosed with bowel cancer in 2013 at the age of 62.After radio and chemo pre op it was then discovered it had spread to the liver.Went in for liver surgery asap and had 60%  of the liver removed along with the gallbladder,followed 3 months later by a bowel resection and a stoma. Six 3 week rounds of follow up chemo with a stoma reversal 14 months later.l have just finally come off of all medications as the bowel has finally agreed to live in harmony with the rest of my body. It has been a long and trying journey,but during that time l have built a new retirement home whilst continuing to look after my small crofting enterprise of cattle and sheep.

                                                                                        l have been left with nerve damage to the feet,but the brain long since stopped telling me about it,when l got tired l collapsed in bed,when l felt rested,up and at em again.For me having strategically located portable toilets was a great help, as was the responsibility to fight through and get on with life for the others l met during treatment who did not get the chance l had.

                  Its a very daunting prospect  but not automatically the end, people will always have a reason to go on, but make sure you give yourselves reasons to get out of bed each day and keep getting on with it, Being bloodily minded stubborn l found to be my greatest asset,and never ,ever letting myself off the hook even though l had so many perfectly resonable excuses to do so.

Six years on l am active, fit,and healthy and look younger and better than those around me that did not have to  face the challenge life presented me.l do not know what the future holds  but l make the most of every single day and relish the prospect of tomorrow

Good luck to your husband,and tell him to make full use of the NHS professionals around him, they are very special and competent,and good luck to yourself and the strength of character you will need to pull you both through.Do not forget it is harder for those on the outside not undergoing treatment,use your friends and support groups and be kind to yourself-----l wish you well

Thank you for the lovely message and positive thoughts.

My husband also had his gallbladder removed and the chemo has taken its toll on the nerves in his feet too.

it sounds like you are determined not to be beaten....just like my husband.!

Im convinced that having a positive attitude makes such a difference but I know it's not always easy.

We are thankful that at the moment the bowel cancer has not returned but his neuroendocrine cancer is incurable and inoperable .

He is " living with it"; The emphasis on "living" as much as we can.

Treatment includes monthly injections, pills to take and recently a years worth of radioactive therapy that had us sitting at opposite ends of the room and housebound fir two weeks after every course. Now waiting for a scan in March to see if it has slowed things down, which is all we can hope for.

Im so pleased you are able to get on with life as well as you do. 
you sound very busy.!

We wish you well with your crofting. Sounds like you must live in a lovely area.

Keep positive .

wishing you well.

Hey Denise,

I had my appointment with the Oncologist today and I'm feeling a lot more positive.

It turns out they don't think the cancer is actually in my liver, however they did find small legions in my lungs. The contrast they gave me for the liver MRI went into the skin and not the blood stream, so they couldn't see properly. I have to have another MRI of the liver to be certain.

As for the tumour, it's actually 10cm long and narrow and goes along the wall of my bowel, rather than a lump attached to the side. The reason it's so painful is it's just inside the back door - so to speak - and goes up to the next internal sphincter.

As for treatment, I start a course of chemotherapy next week after my PET scan on Tuesday. They're using Folofox for the legions that have spread and because the tumour hasn't any mutations, they're also using a targeted drug called Panitumumab along with the chemo. Apparently they've had a lot of success with that drug on that type of tumour, so fingers crossed. They're doing the chemo for initially 12 weeks, meaning I visit every two weeks and have a pump attached to a PIC line they're going to fit. After two days when the drug is all administered, a nurse comes to my home to remove the pump. After the 12 weeks they will assess how effective the treatment has been.

All in all it's quite positive. I know it's going to be a fight and there's going to be dark days, but with my excellent support system and the kindness people like you have shown me, I'm gonna give it all I've got.

Thanks again Denise. You've been an angel and have really lifted me and I can't say enough words of thanks.

Neil

Hi Neil

Thanks for letting me know, at least now you know what they intend to do, so sorry to hear about the lessions on your lungs, I do hope they don't find anything on your liver too.

It will be a long road be strong you can do it. 

If you stick to the low residue diet it should be a little less painful for you.

Chemo..........I had a picc line for my first 4 months of chemo and a Hickman line for the second 4 months. It is so much easier and less painful with a picc line, (ask for a cover for the shower) they can also take blood this way. You will find that you are really tired all the time and about 7 days in is when you are most vulnerable, be careful of people with colds or infections. Your oncologist would have told you that Neil. You will find you become an expert at being bored and doing nothing, I found audio books really good as I didn't even want to read. Sleep if you need to and remember it's all about you no one else. I got up every day and tried to do things in the morning because by lunchtime I was wiped out but you will find your own routine.

You never said anything about having an operation to remove the tumour, or are they doing the chemo first to see if it shrinks ?

Let me know the outcome of the MRI.

I am so happy to hear that you're going to give it all you've got.

GO GO GO NEIL !!!

Denise

Hey Denise,

The intention is to see how much / if the tumour shrinks as a result of the chemo and then discuss the possibility of an operation then. 

It was definitely a shock them finding the lung legions, but fortunately they were small and I'm preying they chemo will deal with them. As for the liver, I'm obviously far from out of the woods, but another MRI will answer that question? Should I be worried about that? Surely even if they do find legions in the liver the chemo is designed to deal with them too? I'm working on the basis of no matter what they find, as long as I respond to the chemo, I should be positive about the outcome.

I don't know why, but I'm not nervous about what's to come. I've read all the documentation they've given me and I'll just have to deal with what's coming. I'm working on the basis that the treatment is designed to target all the issues and with luck, I should respond well.

I've read a lot about how the chemo knocks it out of you, but I'm hoping I'll still have the energy to play with my Xbox. 

Thanks again for all your advice. I'm so glad I found this thread. You are really helping me to find my way through all this.
 

Hi Denise, 

It's really helpful to hear your positive experience and hope you are doing well. 

Did you have it in your soft tissue lining as well as your lymph nodes or is that the same thing? 

Many thanks 

Emma

Hi Emma

I am doing very well thank you. I think it was in my soft tissue lining as well as my lymph nodes but ask your consultant if you need to know, they should be able to tell you. 

I'm sorry I haven't been much help, I hope you find what you need to know.

Denise

Hi Neil

Sorry I didn't reply to your last message, I didn't get a notification. Are you still having chemo ? how is it going and have you had any operations yet ? I appreciate how difficult it is at the moment what with this horrible virus going around. 

I would like to know how you are feeling and how the chemo affected you.

Denise