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

Oh IanT

So sorry to hear your news but stay focused and prove them wrong - as you say - you are fit and young - keep fighting

Keeping the faith 

Andi xxx

Hi,

Not an easy post to write. As you say you are young and fit and there are people who defy the odds, including a guy Dave who has posted on here. The cancer nurses are so good and I hope your Chemo goes to plan.

keeping the faith for you and everyone 

Milly 

Thank you for your kind and encouraging words. I intend to fight tooth and nail, I just need the chemo on my side. My wife suggested that we should get away for a few days before my chemo started, so she booked somewhere in Torquay for last week, she wouldn't tell me exactly where, but whe we arrived, all 3 of my "kids" were there with their partners and my 5 wonderful grandchildren. It really was the shock of my life, they all stayed the whole week. It was a beautiful 7 bedroom house, all en suite, a piano room, (I am learning piano), a stocked bar, a heated pool and hot tub. It was the best week of my life, and it has certainly given me even more strength to fight this horrendous disease. I feel so blessed to have all the love and support that I do. I don't intend on losing it all any time soon xxx

How wonderful - keep fighting x

Oh Ian

How wonderful! Just what you all needed. So lovely to be surrounded by your family. Special times to help keep you fighting and your spirits up. Thank goodness COVID restrictions have lifted. We had the added restrictions posed by that! You have the right attitude and take a day at a time.
My advice would be definitely ask the chemo nurses if you have side affects as they have lots of meds/advice which can help. My husband found drinking water regularly including when he woke up at night helped and he used Aveeno on his skin to stop the dryness. He also drank pomegranate juice as it is good for your platelets. The dietitians are a good source of information too.

keeping the faith

Milly

Well, hi y'all, 

Another  little flurry while we've been MIA again (:

Ian, never apologise for being quiet, or anything else- we all dip in and out , with missing bits, when we are in some sort of twighlight zone. Okay, so your little unwelcome guest have been on the move, honestly they are like fleas (: - now, I think I said previously that palliative does not mean check,out, it means treatment of a chronic condition.with the way modern chemo works is pretty good at what it does = cell murder, and 2 on here have had chemo, then immunotherapy, so there is quite a lot they can do for your unwelcome guest. Chemo is no fun, BUT, as Millie says, you just tell them about pesky side effects, the biggie being nausea as there is a lot of tweaking that can be done. Supurb you had a family weekend away and here is to a few more xx

Millie- ye I know what you mean about another thread, with the 'old timers' moving on, and the odd touch base, but on the other hand, I like being on this one as maybe it gives others hope, but I guess our 'experience' might be a bit upbeat if one is in the thick of it(: oh not sure.

What have we have been up to , well I could not let the Queen go off without something- so we decided on the hoof to go to London- ended up doing the walk past - don't ask! All I will say is 10 hours! We felt so fit and healthy- NOT the next day (today) that we went to the send off as well, prime seats at the front of course- not (: ended up up in Hyde park, big screens, Big Ben and big big guns, my feet now look and feel like spam ):. The whole thing was utterly stunning, I found the whole Windsor bit (home by then) required a large box of tissues- incredible- particularly her horse , Emma and the corgi's xx

Anyway take care y'all and 

keep keeping that faith

Hilts x

Hi Hilts,

Well you won't believe this but our paths have crossed. We were in Hyde Park yesterday but we opted to stand and wait for the Hearse  and see the Queen's coffin as unlike you we didn't go twice as we were in Portsmouth for the week before and live further away. We went into the Park to watch Her Majesty travel to Windsor and the service there. I found that emotional. Sad but not tragic. . I'm a Royalist but I think you'd be hard pressed to deny her dedication to our country. So another connection to add to our list!

Yes I know what you mean re thread as hearing positive stories does help. Also if newcomers to this thread have questions they can ask and hopefully we can offer some advice. My husband did have an episode of dumping yesterday on the train back and he spent most of the journey back on the loo!  so I had to alert the staff in case he was on the loo as we got to our station! The guard was really good and alerted the driver. Fortunately we got off the train and he was Ok on the short car journey home. He's been doing great with  no issues for about a month. He's still in bed today as it's took it out of him. It's unsettling but hopefully these episodes as he calls them are deminishing . For information he takes Imodium and Dioralyte to replace the salt, electrolytes etc. 

Anyways still keeping the faith

Milly

Hey MIllie,

Who'd a thought it. We may well have been standing next to each other !!!. My legs are still killing me- but for once Hub's didn't stuff his guts (what's left of them) all at once. He was restricted in portion size as we were eating on the move. He did swallow a fair few glucose tabs en route , more because he likes them I think. No , dumping this time, which is rare (: but most importantly- we pulled it off (:

keep the faith

hilts

Hi Hilts

Sounds as if you had a great time - well done xx. I wanted to go to Windsor - which is really close to me - but the new supplement was really playing up so didn't dare !!   What glucose sweets does hubby take - sounds like a good idea??

Kerpin the faith

Andi xx

Ah, Andi,

Yes, It was amazing, but my legs are not very happy at all!

We are not far from Windsor, up the road, place with a few colleges, we went in August as I had not been since 1977 and just fancied it (: we sat is St. George's chapel, just above the vault (: 

The glucose tablets- yep, suggestion from one of the local fellow travellers. They are the ones diabetics use, even though a diabetic friend of mine just uses fruit pastels when feeling a tad wobbly. We get them from a well known supermarket beginning with S . Or huge boxes from a on line large retailer beginning with A(: they are called dextroenergy and come in loads of flavours, sweets essentially, but melt rapidly. Hubs uses them, but then has to follow up with a carb rich snack- as diabetics do.

There are loads on the market, but these are dirt cheap and very effective- always on the bottom shelves , with the more expensive (same thing) more in the eye line

Keep that faith y'all

Hilts

Ah, Andi,

Yes, It was amazing, but my legs are not very happy at all!

We are not far from Windsor, up the road, place with a few colleges, we went in August as I had not been since 1977 and just fancied it (: we sat is St. George's chapel, just above the vault (: 

The glucose tablets- yep, suggestion from one of the local fellow travellers. They are the ones diabetics use, even though a diabetic friend of mine just uses fruit pastels when feeling a tad wobbly. We get them from a well known supermarket beginning with S . Or huge boxes from a on line large retailer beginning with A(: they are called dextroenergy and come in loads of flavours, sweets essentially, but melt rapidly. Hubs uses them, but then has to follow up with a carb rich snack- as diabetics do.

There are loads on the market, but these are dirt cheap and very effective- always on the bottom shelves , with the more expensive (same thing) more in the eye line

Keep that faith y'all

Hilts

Thank you Hilts - will give them a try xx. Andi xx

Hello y'all,

just checking in- nothing really to report, want or need(:

All  of us just had another dose of covid- it really was 'just a cold' this time- never been 'into' testing, but had a few left over in the drawer, so out of curiosity n'all and bingo. So now have 'topped up' hybrid immunity - every cloud n all.

Anyway- what is OC world. Hubs had his barium swallow on Wednesday ( on going inv into cough and aspiration) seemed okay- never mind the medics I diagnosed him months ago-  suffers from 'gut stuffing'- so rams full up what is left of gut and bubbles over- I no longer 'nag' (:, all quiet on the hiatus hernia fixing again- he is umming and rrr'ing whether to bother fixing.

All very quiet indeed- hope y'all are plodding on

keeping the faith

Hilts

Hi Hilts

Good to hear from you and glad everything is going along well. I'm the same really - still waiting for scan results (no news .......) and hoping hernia will behave. Otherwise all OK.  

Two lovely surprises next week - my daughters are taking me away for a mystery couple of nights  - home for one night and a friend is taking me away for a mystery 3 nights - as I was in hospital for my birthday last year and this year is three quarters of an century ( how did that happen) - I am being thoroughly spoilt - can't wait - bring it on

keeping the faith 

Andi xx

Hi all,

Good to hear about your treats Andi - how wonderful! Hope you get your scan results soon. 
Pleased that your husband is doing well overall Hilts and I hope his cough and aspiration gets sorted. He might start listening to you! 

We are doing well, fingers crossed, just getting out and about in this lovely weather. I think you will understand when I say it's so nice to see him doing 'normal' things like cutting the shrubs with the hedge trimmer lol. Dumping happening less, again fingers crossed. Routine appointment with oncologist on 23rd November so hoping that's a non event and we can carry on as we are doing. 

Probably similar to you guys we still feel thankful to the NHS staff.

still keeping the faith for everyone 

Milly

Hi Hilts, Andi and all,

Firstly, I hope you  are all chugging along. I've debated about posting on here for a couple of days almost like writing it will make it real and happen. Illogical but you guys will 'get it'. My husband is doing really well overall, still the occasional dumping  but not for so long and around every 3 -4 weeks plus he can usually work out a reason re what he has eaten. So when the bowel screening kit arrived, he had his last one just before he was diagnosed 2 years ago (which was no action needed)  we weren't concerned. He set off his sample and we didn't really think anything until the letter arrived to say that he needs further investigation. Well you can imagine how he/we felt/still feel - very worried. 

The screening date was for next week at another local hospital - different to where he was treated for the Oesophageal cancer. So he rang to explain about his surgery and to ask to go to the hospital that treated him. To cut it short they weren't sure if he would be able to have the colonoscopy so asked him to contact his surgeon who was very quick in replying saying yes. He has now moved back to the original hospital but we need to wait a bit longer 22nd November to be assessed. We are trying really hard to not overthink it but it's difficult. We don't feel able to tell our family as we don't want them to worry and hopefully it's unnecessary worry - fingers and everything crossed! He doesn't have any other symptoms and the blood isn't obvious to the naked eye. We are away next week on a Turkey and Tinsel weekend with a group trip (ex Rolls-Royce) so hoping this takes our mind off it. 

Has anyone on here had a colonoscopy post op? 

Anyway thanks for reading this - it just helps to tell someone who understands

Keeping the faith for everyone,

Milly

Howdee Millie ny'all, 

OF COURSE you can post here- we all know what it is like and know each other's stories.

Oh bless you - I bet you are beside yourselves! BUT if it is any use, I think we all would. After all we've all been through, we all think " expect the worst, hope for better"  I'm not sure that mindset will ever change! For any of us (:-

As for not telling the family- I agree. Although my lot always meant well it just added to the stress. 
As for what is going on 'down there'- like you said could be something and nothing, BUT I know I know(:-

just remember though - he dealt with one beast etc, and he did have a PILE of chemo .

So gal- cheering all the way for you and keep us up to speed (:-

Rmember KEEP THAT FAITH XX

Hilts

Thanks Hilts, I knew  you guys would understand. We don't have much family and I know they will worry. Really hoping it's not anything sinister. I keep telling myself it's a screening test to help prevent anything becoming sinister! And if he wasn't of an age to have screening he wouldn't even have had the test but still a worry. Feel like you are back in the 'waiting room'. So everything crossed. He does have his 'check up' appointment with oncologist on 23rd November so that's reassuring. The surgeon was excellent at replying back by e mail the same day we asked the question re Colonoscopy too. 

Just watching Footie Derby v Torquay in the cup - man sent off and a penalty to Torquay! 

Has your hubby decided on op for Hernia? 
 

Still keeping the faith

Milly
 

Hi Milly

Life certainly throws it at you - but you are soooo strong - keep positive - everything crossed for you both.   Keep us in the loop - we feel like family now.  The next couple of weeks will seem like months but praying for good results.

Hilts - is your hubby having a hernia op??  My hernia is pushing my lungs and heart and now affecting my daily life. My consultant wants to operate early next year as I have a family holiday booked in January- but am finding it hard to cope now so things may have to change - grrrrr!!!  Unfortunately it's major surgery but he is going to try keyhole using a robot - beam me up Scotty???? 50/50 chance. 
 

anyway - keep in touch. -  keeping the faith 

Andi xxx

Thanks Andi,

Yes we have had more than our share over the years. 30;years on November 1st since our youngest son died aged 3 1/2 months. Kev is knocked by this as we really did think the test would be fine.

 He's just gone to the gym for his active recovery and I'm just going swimming. The original appointment was on 9th November to discuss the Colonoscopy but as I said at a different hospital as it was part of the national screening test. So moving it has increased the wait but we feel it's better to stay with the hospital where he had his Oesophagectomy so now 22nd November for the initial consultation. 

I'm sorry to hear that your hernia is causing you more problems and you need another operation. I hope that you are able to go on your family holiday and have the operation. Keyhole is quicker at healing and I have everything crossed for you.

keeping the faith for us all,

Milly

Hi Milly 

You have had some really hard times - just cannot imaging losing a baby. At least it's only 10 days now to your appointment - everything crossed for you   I was rushed in on Monday - home now for 3 days then back in on Sunday evening for surgery early on Monday. Dreading it but it is getting more difficult/painful to breath - I am very lucky that my consultant can do the operation so soon. Hoping for keyhole/robot surgery - 50/50 chance!!  The hernia is pushing on my heart and lungs. Really fed up as can't really do anything - but just have to cope 

Anyway - keep us in the loop and keep keeping the faith 

Andi xxx