Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

I definitely feel his nerveousness too ! I have an endoscopy @ 1130am this morning (am in the Uber en route now!) ... it's just a box ticking exercise this time of a pre treatment biopsy to be able to join a clinical trial. But, like you and BFG say, the last time I had one - the experience and memories associated weren't great, so a bit nerveous !

Starting my FLOT-A next week, excited to get underway and start nuking it finally (as odd as that probably sounds!).

Thanks all for your great updates too, is super helpful not riding the roller coaster solo !

I'm sure your Husband's procedure will be fine, he sounds like he's doing so well through it, don't worry !

Hi y'all.

That the good thing about being on here. We all 'get it' the ups , downs and everything in between.

i am reassured by the fact that it is not regarded by team as 'urgent'.

I wonder how much of it is 'one experiment too far' LOL. He has been told to eat smaller meals and take it easy, but nah, he eats pretty much like he used to and drink grrrr. But we"'k see.

Surgeons think it is highly unlikely to be anything' dodgy'.

As for the chest drains. I remember them being ULTRA fussy with his. It was the last thing to go. They won't take it out until it is almost draining nothing at all. When you see the size on the bucket, it kinda gives an indication of how much they are expecting!
Off on hols tonight, no packing done....... the sun better shine on the east coast. Apparently, it is 50% drier than the west coast , so fingers x. I think I'll get 'edited' if I say where, but never been to this part of Blighty before so looking forward. At least I am away from work!

take care all,

sort of - keeping the faith

hilts.

Hope you guys have a wonderful holiday !

Hi Hilts 

Have a wonderful holiday and I hope you have fab weather- it's looking good! 

Keeping the faith - even my friend is now using this too!

Milly

Thanx.

Will try. We live probably in the most 'inland'place in England and it is forecasting 23 deg ! East coast 15!

NO RAin in the forecast- or so it appears. I grew up in the 'west of Britain' and rain was mostly guaranteed. Rust rather than tan LOL

Ah yes Keeping the faith- it is VERY nostalgic for me. I think it originated in a 'northern soul' club land- Wigan casino. Have this old pic on the wall, one of those montage-y things. Of us lot circ. 1982 , all on a scooter run to the coast, dressed up to the 9's in full gear. Us girls thinking we were sooooo cool, on the back of these machines that we were way to young to drive !!!!! The Lads in the crew, just about old enough ! Funny I don't remember the rain back then LOL.

As ever 

Keeping the faith

Hilts

I'll probably end up posting while we are away!!!!! I'll miss y'all too much - ahhh

Hi Hilts,

You've made me smile and we also live in the most inland location furthest from the sea!

We used to go to  Sutton on Sea as kids. My dad used to 'pack' the sun in a round tin and take it with us lol.

Have a drink and an ice cream for us!

Keeping the faith (have to do this)

Milly

Living in stapleford,  Nottingham. ..that was ppresty central in the UK.. many holidays in skeggy before we went abroad...

OMG Millie ,

THAT IS WHERE WE ARE GOING!!!!!. Talk about small world !
We used to go to Norfolk on hols, but thought Let's go somewhere we have never been and know nothing about- so booked. Never heard of the place, not surprising as I originate from completely the other side of Britain (Port Talbot- where even the pigeons glow LOL) and of course I've heard of Skeggy. Like Barry Island and Great Yarmouth- I love them both as they are un- gentrified , and have all the brilliant things that the well heeled love to hate - their loss in my view.(:

We now live / work in Oxford so I think it is very far inland compared to Port Talbot.

OMG- the next thing will be that we either all know each other, either through friends of friends or we are all related!!!! Nothing surprises me anymore LOL

Keeping the faith (:

Hilts

Lol Hilts,

That's uncanny. We went in September last year before the shock diagnosis - no symptoms then! He is still in step down and will be over the weekend.
 

Its  a small place with a big beach! Great for rounders or cricket. Last year we stayed in a house called Twenty just a short walk from the sea front. There is a cafe on the corner and I'm sure you'll find the pubs lol. Pack the sun and have a lovely time. Skeggy isn't far away if you fancy a day out somewhere a bit bigger.

We love Oxford - Sutty as we call it isn't anything like that but it does have its own charm somehow for me anyway. A big group of us used to go and I remember us all doing the Ministry of Funny Walks along the prom! Happy days.

Keeping the faith  and nice to talk about a different journey. 
 

Milly

Morning all, hope you're well.

Does anyone have any tips / advice for food to stock up on in the weekly shop today to help with getting through Round 1 of FLOT next week ?

Any tips on good things to eat / drink to keep strength, energy and weight up throughout would be hugely appreciated.

Thank you !

Morning all, hope you're well.

Does anyone have any tips / advice for food to stock up on in the weekly shop today to help with getting through Round 1 of FLOT next week ?

Any tips on good things to eat / drink to keep strength, energy and weight up throughout would be hugely appreciated.

Thank you !

Hi Redski

Great question - and I wish there was a great answer. This is the bit at the beginning of the roller coaster where you are slowly getting to the top,  not knowing what's on the other side. 

Expect to lose weight in the first week, then bounce back in the second irrespective of what you eat. Your

Taste will probably be affected and what you love now may change, but the usual high fat, high protein foods should help - dairy,  chicken etc. 

For some of us, eating had become a problem and this,  for me, eased off after the 2nd cycle. 

Once you know what works for you, then this will help for the remaining cycles. 

Hi Redski, my Dad has been increasing his intake of fruits and veg by making lots of smoothies (my Dad hasnever been one for much fruit and veg)- investing in a blender is a good idea (we bought a nutribullet and a cold press juicer). This way, you'll be getting plenty of goodness and they're quite easy to swallow - also you can pick what certain foods you're wanting to increase on,- my Dad has plenty of bananas to increase his potassium. Also my Dad has started to have protein bars most days. Our oncologist advised to try and eat very small portions but more often.

Lee

Thank you so much, both - that is very helpful. 

I'll dust off the blender and add some smoothie ingredients to the weekly shopping list as well as some high fat and high protein foods - thank you.

Not quite as tall as you BFG, but at 6' 2" and 100kg it's insightful to know what worked for you at keeping weight up.

Thank you.

Hi Redski,

As.Bfg said it's a case finding what suits you. However smoothies are a great idea. My husband was fortunate to be able to eat, it did get better after 2nd cycle. I cooked meals as normal but made more deserts. Thinks like banana and custard are easy and good. Fruit crumble etc.

Porridge with blueberries/raspberries etc.

Also added garlic and ginger to stir fries. Noodles and pasta seemed easy to eat. Fruit and veg but also cream cakes and high fat foods. It also depends on your starting point. My husband was on the lower side of his BMI but managed to gain weight.  He ate snacks like fruit and nuts, crisps and crackers inbetween meals. Drank whole milk, hot chocolate, Horllicks. Also had peppermint tea and lemon and ginger tea during chemo. Honey and lemon too.

He did feel nauseous at times but anti sickness tablets helped a lot. Chewy ginger seemed to help. He did wear the anti sickness bands on his wrists  (from the chemists).

A rainbow diet is a good way to look at it. Getting some fresh air helped and even a short walk made him feel better. 
I hope this helps.
Keeping the faith 

Milly

This is so helpful too Milly, thank you. I hadn't heard of the bands from the pharmacy but have now bought some to hopefully help me in Round 1 this week - so thanks for mentioning that !

How is everyone getting on ?

Hope you and yours are all well

Hi Redski,

I'm pleased the info helped. A friend whose an ex nurse suggested the bands for my husband, worth a try. I presume that you've got a thermometer as you will need to check your temperature once a day. Something else I thought of was my husband used a heat pad on his throat to help with the side effects of oxaliplatin. Also he used Aveeno to help with dry skin snd Diflam for mouth ulcers. The best thing to do though is to speak to the nurses about any side effects and they will advise. Diflam if you need it can be prescribed.

My husband is still in step down and it feels like I'm tempting fate if I I say too much. So .... so far so good. 

All the Best

Keeping the faith 

Milly 

Hi Milly,

I'll take so far so good. :-)

Well remembered in the thermometer, I forgot about that.

Redski - infection is probably their no 1 concern,  and I bought a cheap and cheerful digital thermometer from an online well known retailer and it did the trick in monitoring. 

Another anology from me is that you are about to enter a forest of potential symptoms and you will get out the other side. You may come up against a number of different ones,  but it's a case of being aware for what they are IF you do. Ray and I for example have very different reactions to the white blood cell booster jabs. 

You are given different tablets to counteract the major symptoms,  but share your symptoms with the team - if something isn't working, there are often alternatives.

Yesterday was our first lunch in our back garden,  and we indulged with a bottle of bubbles called Carpe Diem. We toasted you all.  'nuff said.

Bfg

Cheers bfg... and everyone else.

I am at the hospital right now...my Dad is inside having his second covid jab. The roll out is a bit slower here but nicely catching up.  For a while no one seemed to know whether a cancer patient could have the vaccine but then we got a call and said my Dad was fine to have one particular vaccine- I think it's the maderna one! (Not sure if that's spelt correctly). 

Lee

Hi Bfg and everyone,

Love the bubbles! Perfect and very true! 
 

Hope all that are able to are enjoying this lovely weather over the bank holiday.

Keeping the faith

Milly 

Hi Redski

When i was on flot i drank 2 litres of milkshakes every day and more or less maintained my body weight pre op , as my appetite for other foods was very poor ,i know others who have done much the same , above all get plenty rest on the home days i know it's boring but it's a must do and pays dividends in the long run , take it easy

Regards

Douglas