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

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

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.

[@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

Hi all,

hope you all doing ok, best wishes for Kev, must feel like a pin cushion! Definitely agree with Hilts ethos on the rock n roll life style, I did the whole healthy (vile) smoothies and homeopathic remedies thing but actually all it did was make me miserable, so back to the little of what you fancy! 
my update is that I had my CPET today, managed to get through that ok then I had another scary talk with one of the consultants, they really know how to scare the bejesus out of you! 
micro ablation booked for the 19th and big op for end of August.

trying to keep the faith today, be ok tomorrow, stay strong everyone 

Hi Gerrie,

Well I've not counted the scars lol. Yes they certainly know how to scare you! After my husband consultation the next day  I spent 3 hours crying whilst I had my hair done! Bearing in mind the hairdressers had only just reopened again - so most people were very happy! Fortunately my hairdresser is a friend too and understood! 

As I've said before the actual Oesophagectomy couldn't have gone better and he is able  to eat well. What happened to him was very unusual and it was the second emergency op that has caused the onsuing problems.

One thing I haven't mentioned on this forum, as I was unsure whether to, is having an electric bed (no I'm not being rude lol). We had ordered a new bed in September before all this kicked off. It was from a local shop so after some investigation we decided to ask if we could change the order and he did. It was ordered and made in Rotherham and delivered in a week. It has been so helpful and we opted for two singles which work independently so great for a cuppa and reading my book too! Also you get the VAT off for medical reasons. If anyone does decide to look into this option be careful as some want to come to your house and won't quote a price until they are in your home.  Just a thought ...

You are on the path Gerrie and stick with it - they have to give you the worst case scenario. Lots on here have been through the process and no one case is the same. Many good outcomes including you after all you've gone through the last few years. You are an inspiration.

Keeping the faith 

Milly

Bless you Milly for your encouraging words, I know I'll pick myself up and dust myself down in a day or two. I was really lucky as I was able to have one of my daughters with me today, which was just as well, as I didn't take it all in! 
good advice re the bed, will have a look into that, although living on an Island does have its delivery issues! 
take care

Gerrie

Hi all,

It looks like it's been very quiet on here which I hope is a good thing. We are plodding on. Kev has been back home for nearly 2 weeks after his third urgent operation. It all seems unbelievable but hoping he can continue to recover. We saw the surgeon who performed the Oesophagectomy and he was pleased with him so far. He sees the thoracic surgeon from the other hospital next Tuesday. His breathing is much better so fingers crossed. His eating is still good - feels sick at times but is getting used to managing it better. He really needs to gain some weight back as he has lost 2 stone in the eight weeks since his first operation. Not sure about another round of FLOT / will see what they say. Staging is now T2 NO. We didn't get anymore detail Hilts like your Bletchley Park! 
RayB I know that you had complications and pneumonia which Kev has had just for good measure! You had second FLOT - so hoping Kev will be offered it. He is definitely more anxious about it because of how critically ill he's been. Hope those who are able can enjoy the sunny weather. 
 

Keeping the faith

Milly

Hi Milly, 

Good to hear Kev is doing well and that the surgeon is happy so far.

I know it has been quiet on here - as daft as it sounds I have been missing the e-mails popping up on my phone!

Quick update on my Dad- he is coming to the end of his 2nd round of chemotherapy and the swallowing is fine but he hasn't really felt like eating much due to the severe side effects of his covid vaccination (which the oncologist now says he shouldn't have really had whilst having chemotherapy). Just over a week ago my Dad starting wanting to wee every hour or so and experienced a burning sensation and also had lots of blood in the wee and said he could see little blood clots coming out. So off we went to the hospital and after blood/urine tests the doctor said it might be an infection although it's not showing or it might be some damage that the chemotherapy has done. The doc prescribed a course of antibiotics and yesterday and today my Dad is seeing/feeling an improvement.  I guess just another 'up & down ' on the rollercoaster journey!

Take care folks,

Lee

Hi y'all.

LOL - I was wondering why it was so quiet recently. I even went on to check in case I'd missed any notifications!!!! But didn't really have anything to say- well nothing useful anyway  (: It just goes to show how helpful we have been for each other and we miss people when it is all quiet.

Millie- glad to hear Kev is plodding onward and upwards. Every week, almost unnoticed the upward recovery trend continues until they are moving back to themselves. You staging sounds good too. N0 is an absolute cracking result. The post op chemo, er what can I say, some chose to have it some don't, mine did, but his body got well pee'd off with the platinum after the 2nd lot. There are lots of adjustments they can make to, like 2 lots instead of 4, half strength. It's all about what can be tolerated.

Lee- chemo is absolutely foul stuff- it murders dodgy cells very well, but certainly it impacts on healthy cells as well. My guy had the odd splash (sorry if tmi lol) of blood in wee and 'other'body fluids (: he got a fair amount of 'odd' bruising too. That why they check platelets( clotting) before every 'juicing'. My guy also had tiny little blisters in really odd places again very cross healthy cells. 

What have we been up to ? Well not a lot. Apart from, him buying a new car ! First off he was thinking about getting another estate. I off the cuff said , "no way ,this chick is wanting wheels with kerb appeal "LOL ,I am 52 not 22!!! so eke he came back with a jag sport and is picking it up on Saturday , I am laughing writing this as I can't believe he did it. As he said ,after the year we've had he fancied letting rip and then said " well, I can't stuff in my shroud"!!! and the tax man's not having it..........he really has started to get that " life is for enjoying vibe" yay

I think I've said he is back at work but he overdid this this last week with all the football upset & beer and his body has just reminded him of what it needs, and although he is 7 months post op, he is only 4 months post treatment completion.

He is still coughing, but under control. They are going to do a 'ballon dilation' of the anastomosis ( oh I spelt it right) basically tight scar  tissue at the join between what's left of his oesophagus and stomach TMI, this time he is most defo have sedation (: aparently very common- like 47% eke

Anyhows, for someone with not a lot to say, I've said, as usual quite a lot (:

take care y'all

keep it up and keep the faith

Hilts x

Great to hear from you guys - yes I've missed the 'chat' too. 

Lee : I'm pleased your dad is feeling a bit better. Yes COVID jab is a strange one - my husband had his before and inbetween chemo. Chemo is pretty brutal from what I've seen/read  but hopefully it's working if his swallowing has improved.

Hilts:: Kev was always going to have 2nd FLOT but because of the internal bleeding land him having pneumonia, pleural effusion and an operation to remove the pockets and expand his left lung he is a lot further back than he should have been. Hoping he can gain weight and build his strength. See what Oncologist says at the end of the month.

Your guy has done so well but it shows that even though he's made great progress it's not always 'plain sailing'. I hope his procedure goes well - from what I've read as you say it's common but fixable. Who knew we'd all become 'experts' in such matters!

Kev also feels more vulnerable with the Covid situation having  been so ill  and had such severe lung problems. Such a good job he had the thickening peeled back on his left lung or he wouldn't have got better. Our bodies are so complicated!

Keeping it up and keeping the faith!

Milly

Hilts,

I meant to say great that you're having a sports car! Why not? My husband bought an Audi TT a few years ago snd it's lovely! Yes 'shrouds don't have pockets'. I'll be glad when we can get back to booking trips, concerts and generally having fun. We should have had a European road trip in June 2020 but we will do it! So glad that we've always done 'what we can, while we can'. Life can throw curve balls which we just don't expect. Road trip? 
 

keeping the faith

Milly