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

Thanks Doug,

Enjoy your drink or drinks and congratulations on your operation anniversary! Being in a pub is a novelty itself these days!

cheers and as always keeping the faith

Milly

Hi Lee

I reckon 2 pints of tennants lager tops will see me into a taxi , cheap day out though ! lol  

Take it easy

regards

Douglas

Hi Milly

thanks for that , 2 pints of lager tops and in a taxi probably lol

Take it easy

Regards

Douglas

Hi Y'all, 

Oh Millie- Pernod & black. That is a blast from my past too. Along with ouzo (or oozy as we called it ), southern comfort and rum.. can not touch any of the stuff now, even the smell.... I'm sure we drank ouzo with bitter lemon yuuuuck!!!!! I have never liked wine, none of it. Nowadays it is pretty much only Ale with ginger beer top.

Some 'perfumes' I feel sick smelling these days as I brings back memories of waking up with hangovers from hell ((((:::: Obsession & Poison being the absolute worst (:

Doug , I really really hope you enjoyed your larger tops. After all you have been through, that 1st sip will be the best you've ever tasted (: and here's to many more- yay.

Millie- his appetite sounds great and if he is getting hungry even better. If I look back to January that was  where we were, but take heart,  6 months on and it is ,as I have said many times,  a surreal , bizarre memory.  We still think and ask 'did that actually happen, was it real' ?

One thing it has really brought home is the 'enjoy the now' and the 'small' things. I think we all have a tendency to look for the biggest and best of the things that the world has to offer, but since the last year, I have found myself really really enjoying a coffee by the canal- something I would always have found 'nice', but I am tending to notice more things around me......maybe I need to get back on the Pernod (:

Always keeping it up and keeping the faith 

Hilts

Hello everyone,

Had my feeding tube removed on Monday and met my oncologist today chemo is now finished whooo, time to start living , slow road , small steps.

My sickly feelings weren't as bad as some on here, just eating slowly and chewing seems to get me through most meals my portion sizes are usually half of what I used to eat and I do tend to leave something on the plate, I have twice had the dreaded dumping syndrome and it's not nice, won't happen again just have to be a person of moderation now.

I think this is a massive journey for anyone going through this either the person diagnosed or the immediate family this forum has been a great help to me and I don't know how people whom have been through this journey without the likes of this have coped.

Ray keeping it real 

Feel free to ask any questions (it's good to talk)

Be strong

Maybe a few sherberts this weekend 

Hi Ray, good to hear your chemotherapy has finished and you're doing well - I think you are right about moderation...small steps at a time.

Keep strong and good luck 

Lee

That's such good news. Hopefully the journey ahead for you is a lot more gentle the one you've just completed. 

Yay Rayb

You  made it through. It is such a relief finishing, and yes the recovery begins now the mission is complete. 
It is the emotional stuff that is the most difficult I find. No one is bothering us anymore. I'm okay about it now, but for the 1 st month I was like " arrrg, are we supposed to be somewhere doing something?", despite them telling us he is disease free ( for now !) I wanted to know how they were going to check if there was a cell hiding under his little toe nail or somewhere- they soon sorted that out, by pretty much saying f- off and live LOL!
Today is husband 57 birthday, his first since diagnosis, so a special day. 
He went to the pub last night to watch the game! Me and the kids just couldn't watch it- I am not even English as such, south Wales, but I have 'leave to remain' over the bridge (:. He and the kids are English. I heard the pub in uproar, carried on out the garden, then heard the 2 nd roar, so we turned the telly on at 91 mins, I don't think I have paced like that for years and sweated more than when we lived in Egypt (:::

After 4 pints (again) he came back, and I have to say I have never seen him so emotional, last time England pulled it off was 1966, he was 2!!!!. So along with being disease free, his birthday and England pulling off a cracking job, it was the best day ever for him ( apart from when he married me that is !)

keep it up and keep the faith

Hilts

Hi Hilts, I'm sure your wedding day was his best! Good to hear it's his birthday- another milestone reached and hopefully many more to follow.

Lee

Hilts

4 pints again??????  That's just rubbing my nose in it.  Can I ask what he drinks?  It may help me decide what my first pint in a pub is going to be for over 18 months.  And wish him a happy retrospective birthday from the bfg!

Ray - glad to hear that you are now on the up and up and up.  Recovery mode is underway (I almost miss my huge amounts of pre-chemo dex - almost)!

Milly - wish I could add  meaningfull stuff to the Nausea question.  Meds worked for me post-op - but my diet was and still is anything other than normal - more regular and high-energy to keep the weight up, But now post chemo will try and introduce a healthier balance of fruit/veg/salad.  The nausea I had was generally at the time of eating, rather than post eating - i had to ignore it and eat.  I often got some very strange reactions about 3 hours post eating - "late dumping" covered the symptoms, but rather than being an hour it was 3 hours after eating.  I stopped eating sugary things for a while and gradually re-introduced, and now only get the symptoms once every 2 - 3 weeks.  I think also that "volume" may be a trigger too, so tend to ensure that if i'm full - i don't force more.  It has improved though over time, so all I can add is to play around with the food to see what works - when you find something that does, then buy loads of it - then he'll go off it (the look on my other halfs face..   :-)), but things will improve.

cheers all

bfg

Hilts

4 pints again??????  That's just rubbing my nose in it.  Can I ask what he drinks?  It may help me decide what my first pint in a pub is going to be for over 18 months.  And wish him a happy retrospective birthday from the bfg!

Ray - glad to hear that you are now on the up and up and up.  Recovery mode is underway (I almost miss my huge amounts of pre-chemo dex - almost)!

Milly - wish I could add  meaningfull stuff to the Nausea question.  Meds worked for me post-op - but my diet was and still is anything other than normal - more regular and high-energy to keep the weight up, But now post chemo will try and introduce a healthier balance of fruit/veg/salad.  The nausea I had was generally at the time of eating, rather than post eating - i had to ignore it and eat.  I often got some very strange reactions about 3 hours post eating - "late dumping" covered the symptoms, but rather than being an hour it was 3 hours after eating.  I stopped eating sugary things for a while and gradually re-introduced, and now only get the symptoms once every 2 - 3 weeks.  I think also that "volume" may be a trigger too, so tend to ensure that if i'm full - i don't force more.  It has improved though over time, so all I can add is to play around with the food to see what works - when you find something that does, then buy loads of it - then he'll go off it (the look on my other halfs face..   :-)), but things will improve.

cheers all

bfg

LOL,

yep BFG- he's incouragable! Honestly. He's sitting opposite me watching a re run of the goal & reaction and is trying badly to sign 'sweet Caroline' arrgg.

i need to go off the a health farm offering a weekend of the 'Keith Richards health promotion plan' !!

He's on the 'local juice' Hooky. Hook Norton ales. Even I like that (:

Millie- I go with what all the previous have said about the nausea. Absolutely trial and error, and it DOES improve over time, husband really stays away from potatoes , pasta and rice. Gives him dumping. Beer doesn't strangely enough ! He's also finding he doesn't use the glucose tabs any more- I suppose because he has sort of got used to what he can and can't eat. 
As strange as it sounds and I remember from my nurse days, that even when people felt green sick, we would get them to eat, nibbles of things like crackers, toast , anything really. Also found when bud and was on the post op chemo if we shoved a load of water and delicious feed down the tube, he felt less sick.

Anyhows

keeping it up and keeping the faith

Hilts

Gosh, so much to catch up on! 
just to add to the nausea thing, ginger has always been my 'go to' 

really interesting to read everyone's experiences, I'll keep them all in mind for later on. The latest is that I'm having micro ablation on one of the liver tumour, then oesophagectomy and other liver tumour slice and dice at the end of August beginning of September. Must admit now I've decided to go ahead and have the op, I just want to get on with it! 
Thinking of you all and keeping the faith

Hi all,

Pleased to hear that you've finished the chemo Ray! I wish you a smoother recovery. Well done as it certainly hasn't been a straight run for you.

Great news Hilts and 4 pints should be your husband's nickname. Yes good win. Good win for Andy Murray too!I was lucky enough to see him win in 2013 - great weekend! 

Thanks for all the helpful tips re sickness. He does take his time and does tend to stop when he feels full. As you say time and finding what suits seems to be a key factor.
 

Now for our update. We knew when Kev came home with a moderate pleural effusion that it was a considered risk. We had open access to SAU which we used when he developed his severe allergic reaction.

As planned he had his CT scan on Saturday,  appointment with specialist respiratory consultant from another hospital was arranged on Monday for Tuesday. Saw the consultant who said an urgent operation to sort the pleural effusion was the best chance to enable his left lung to expand. So took him in today, fast tracked through consultant met us there along with his registrar. Op planned for tomorrow- hoping it's keyhole but could be open surgery.  
 

So please send positive thoughts as he has been through so much already. 3rd major op in 8 weeks. Not as big as first but nevertheless another big hurdle. He is amazing and physiologically it's very hard especially after what he's been through. Obviously I'm very anxious but hoping this will help him to fully recover. It's just so hard as this is a complication from the second emergency op and pneumonia. 
 

Soo keeping the faith 

Milly 

Be strong Milly,  you've both done really well along the journey,  so just keep going.  

Good luck.

Tabnabs - same for you, now you've made the decision- go ahead with both barrels! Good luck to you, it sounds like there's a good plan in place.

Lee

Lee

Milly,

sending you and Kev, loads of good wishes and tons of positive vibes
 

keeping the faith, all of them (like to cover all bases!)

Hi Milly

With you all the way with special BFG positive thoughts.  If they are anything like my hugs, I've accidentally cracked bones, and once when a friend turned up with his wife (who is about Hilt height), she looked up and fainted just at the thought!  It turned out to be an inner-ear infection, but I tend to miss that bit out with the story.  :-)

Hilts - Old Hooky!  I remember the beer well from my time up in Bath and Bristol - not quite by where it's made - but close enough.

keeping the fffaith

bfg

Hi all,

Thanks for your messages of support. Bfg you made me smile!  The op has gone to plan - he is in a different HDU. Still a way to go and two drains in situ. Just wanted to let you guys know. Will update you in a few days. Please keep sending those positive thoughts!

Hooe everyone else is keeping it up and keeping the faith

Milly 

[@Milly58]‍  That's great news the ops gone to plan. Fingers crossed and "keeping the faith" :)

Personal update: Had my meeting with my oncologist and have got my chemo plan booked in. I'm on Cisplatin and another drug I didn't catch the name of. Means I only need to go to the hospital (and thankfully it is my local one too) once every 3 weeks. As it is just to help relieve some of my (future) symptoms it'll be extremely light touch, I shouldn't even experience hair loss and shouldn't feel too ill on it. 

Been really uncomfortable with stomach problems but oncologist and GP have now arranged a whole array of drugs to help (I'm starting to rattle...). Managed a 6 hour "nap" today which is the most I've slept in two weeks. 

GP seems to have foolishly given me carte-blanche on any drugs I might want (she was most concerned by my diagnosis) so hey... worst comes to the worst I'm going have a real fun time! ;) 

Family seem to have come to terms with the diagnosis (no more trying to get me to drink awful healthy drinks...) and I can now start planning fun adventures with my friends and family to pass the time.

Hi y'all, 

Jaeof Kent- you"ll be with us for a long while yet. Remember palliative does NOT mean check out soon- it means treating symptoms to keep the thing under control. I think you have probably already read on here that some palliative's have become 'non palliative' and disease free..... so, sorry you're stuck with us for a while yet.

what chemo regime you on? Sounds like EOX ??  Maybe as I remember cisplaitin is the one that is given overnight. Possibly the other maybe oxiplat. Either way you may  or may not feel like the proverbial (: BUT it will highly likely stop most of those gut symptoms. We all expect a full update. You will likely have a 'fetching ' central line either PICC or Hickman- we are all experts in the 'lived experience' (:

The drugs - oh god yes, thousands of them when on chemo, steroid, anti sickness, anti dah de dah. Think 'smarties'.

and yes- the 'Yul Brenner' look is all the rage and quite 'fetching' (: so if it does decide to fall out- you will be one trend' (:

As for a 'healthy diet' nahhh. No need for that. My view has become very pragmatic, you know we all try and 'follow' a so called healthy lifestyle and this sheeeite still happens, sooo it is the 'Keith Richards health promotion plan' for me. 

Anyhows, all plodding on ..

keep it up and keep the faith

Hilts

Hi Jae and everyone,

Thanks for your reply and I hope your Chemo is going to plan. I can only agree with you in enjoying yourself, planning trips etc. Also as Hilts said there are cases of palliative being long term and cases on here like Tabnabs where Chemo has worked very well.

Our update is Kev has had the surgery on his left pleural cavatiy. Another major op but a shorter stay in hospital as it was keyhole. More scars to add to the collection! Drains removed Saturday and Sunday. Home yesterday tea time. Yeh!
He has lost a bit more weight (nearly 2 stone in total) but not surprising after everything he's been through. However he is eating well so hoping he can start to gain some extra pounds. Everything crossed for a smoother journey now and he can start recovering from a mahusive op and 2 more major ops in 8 weeks! Oh and the sexy stockings are back - white this time lol. 

Drug list is long but hopefully this should reduce and his vasculitus has nearly gone now. Few red blotches on his knees. I can't believe it's almost 9 months since this all began. 

Keeping the faith

Milly