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,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

Hi Distraught

there are a few of us on here who have been posting for over a year and throughout the 50 odd pages of posts , in reponse to your PET scan question in my case it was about two weeks after the scan when i first met my oncologist , this is the point when you will get an indication of the grade of the tumour and size , in my case it was less than 3cm  and non invasive , the treatment plan was agreed and then about a month later i started 8 weeks FLOT followed by a months rest during which i met my surgical team and had the necessary pre op assesments ,  then on to the main event 10 hours surgery , two weeks in the ICU and general ward and then home , i was seven months start to finish and believe me as the patient it absolutely flew bye , i am 16 months post op and probably will be recovered to the  level i want to be at by mid 2022 , i know it's a bit much to read through 50 odd pages of posts but there are stacks of hints and tips in there , the main thing is NHS cancer care is second to none and the people who specialise in the oesophageal cancer are at the top of their game , if you have any non clinical questions feel free to ask them on here and i am sure someone will be able to offer some advice , there are quite a few who post on here who are the patients family and i understand you have a different perspective , as the patient i can assure you you never feel neglected during the process but it does require an element of patience to get through it , don't Google anything  just ask on here !!! or phone Cancer UK , take care for now and keep posting

Regards

Douglas

Hi y'all, 

Hope you are all chugging along. Strange things going on with my notifications. I used to get an e mail for every post, but I though we had all gone off living it up in the Caribbean or something as I was soooo quiet, I get a notification this morning from Doug, to see that there are loads of posts that I have missed- any IT/forum wisdom out there- I checked and I am still following the thread ???
 

Scott/Lee - square up to it and smash it! You'll be done soon enough. In my humble opinion distraction IS the only way to get through the 'big day' . Keeps,the shredded nerves in check- a bit(: Scott- I know exactly what you mean about knowing people personally. As I have said before, we all just might know each other , without knowing it LOL. That's the thing about this site and why I reckon it is soo helpful, we all spill and vent in the 'comfort' of 'privacy/anonymity' only a couple of million people can see it eh. We can and do spill our deepest, darkest and private  without 'worrying' what people might think- not that we should worry about that, but we all probably do !
 

Distraught- Welcome, I am glad you have found us; all fellow travellers and experts in the 'lived experience' (: . I think I will be cheeky and say that this part- where you are - is the worst part of all on this rollercoaster. The shock, disbelief, tears , anger and all the other human emotions exploding. My then 56 yr old husband was diagnosed out of the blue in July 2019, a bit of clogging with food and coughing. E Day (endoscopy day) 29 th July. MDT appointment 8th of August ( we delayed it by a week for holiday- what else are you supposed to do eh) in that time as well as holiday, PET & CT scan etc. That MDT appointment is when you get all the info staging and treatment plan . We got a T2 not lymph's or spread ( Downgraded after surgery to T1b- don't worry , you will become an expert at all the terminology!) As for what you'll be offered, there are soooo many variations, but it will no doubt involve chemo at some point. Keep coming back to ask and vent away. None of us are medics , just as I said 'experts in the lived experience (: Once you know where you are going with treatment, it does get a bit better. Also, as Doug says, google and the net in general is a total horror show; we all have done it , knew we shouldn't and probably still do, but it bears NO reflection on the reality of most of our experiences. 

US- well , cough had gone ( big clapping emojis), back on full diet! BFG- the 'horror' of minced nd moist! at the time though it is the first post op foray into food, so a great achievement, as you look down to your much awaited first meal and tah dah ! LOL - the best incentive ever to move on....

 BUT, there is always one or two- he has had a massive allergic reaction again- this time to the iodine they used on his op site!!! Not anaphylactic, but pretty bad, scratching like a flea bag. Does anyone know if all this treatment makes you more prone to allergies? As his body decided it didn't like the platinum either ):

Anyhows, 

Keep keeping the faith folks

Hilts

Hi all,

Just seen all the latest threads!

So Hilts I don't know but maybe the chemo does make you more sensitive? Kev had the vasculitis on his legs which were covered in red/purple blotches and itched as a severe reaction to sulphoids in the antibiotics he was given. Hope it goes E45 may help? They gave Kev steroid cream and a tub of Hydromol (like lard) lol.

Lee/Scott all good wishes to both dads. Distraction as Hilts  says! And yes I talk to Kev about you guys like I know you all which shows how helpful this little band of OC warriors is to us all! I think of those who haven't posted in a while. Great to hear from RayB!

Bfg you were definitely quicker than Kev as he was diagnosed at end of October but didn't start chemo until end January which was a long haul especially during another lockdown! 

Distraught - I hope it helps that there are a number of patients and family on here who can relate to how you feel and to know that you can come the other side. I'm not going to repeat what others have said already but I agree the waiting/not knowing is very difficult to put it mildly. I was gagging each morning I got up and the fear is awful. Once the treatment starts you have a plan to focus on.

My husband's path took some unexpected and life threatening twists and turns as you will see from my previous posts should you wish to read them. However, with the brilliant care from the experts and all the NHS staff he has come through it, against the odds at times and we are beginning to get our lives back.  As others have said Google is not a friend and the stats are out of date and don't take the individual into account. Everyone on here whilst having similar treatment has not experienced the same effects/outcomes. Be assured the upper Gi Teams are brilliant and my suggestion would be ask them anything and take everything a step at a time. It's not an easy road but it can be done. I found Macmillan nurses on the support line helpful. Also some have used Maggies. We only had phone calls with consultants etc and didn't meet the Oncologist until January. Look after yourself too and ask for support if you need to. The team did a holistic assessment and I asked for physiological help as I knew I was finding it tough as we have previously experienced traumatic situations.  Sometimes talking to strangers is easier than friends.

keeping the faith for everyone 

Milly
 

Morning all, hope everyone's OK and keeping on trucking along on their respective journeys.

Some good updates to read about your Dad, Lee and progressing with the op to throw everything at it and Hilts with your man breezing the corrective op and back to his antics with the pints !

Just completed the 4th and last, post op treatment yesterday - so a week of feeling grimey and GOG like (BFG-ism!) then can focus on trying to get fat again over Xmas - bring on the Quality Street, haha !

Thanks for all the kind help and support along the way on this journey, it's been a roller coaster but you've all kept pulling me along and towards the finish line !

At my hardest point, post op treatment Round 1 when I felt the worst I ever have, and said to my Wife (amazing Claire, soldier throughout and many moments of feeling like a single parent - not easy orchestrating all 4 of them single handidly whilst I was KO'd in bed some days, but she's trooped it thru and am in awe of her) I don't know how I can do another 3 of these and felt like I was going to have to Tap Out early, but you all kindly encouraged me through, and I've done it !

Thank You !

Hi Redski,  great news well done . Sounds like you have all got through it together,  big congrats to you. Enjoy those Quality Street!.

Lee

HEY Redski, 

Good to hear from you. you've done it too then - thousands of clapping emoji's. FINITO x

The post op chemo is tough, tough, tough, BUT through it you all are. In my view that is when recovery really began- so tins upon tins of quality street is your xmas 'research project'. As for mine and the pints, nothing keeps him away from that research (: The cough had now completely gone, so he can no longer claim 'medicinal' - psychological therapy will be his new quest ): 

I can certainly relate to your Clare (:- it's weird though, I felt okay about it at the time,  it was like 'right, this is how it is going to go' it was afterwards that it caught up with me when I had a lot less to do !. Flat spot about 4 months ago, but feeling better again about it now.

My notifications are back today- weird 

Anyhows, off out with my friend for my birthday- husband in charge of home front with NO beer

Keep on keeping the faith

Hilts x

Happy birthday Hilts...after the last year or so I think you well deserve a big celebration...enjoy

Thanks Hilts. She can probably relate to you too. On treatment days and bad days ; she's managed to jet wash and re-seal the entire patio and the driveway, paint the garage, paint the shed, treat and coat protect all the fences and a bunch of other DIY madness that kept her mind off things, made her feel productive and get a good sense of reward at the end of it. Made me chuckle as I think you said you did similar things too from memory.

Happy birthday Hilts! Have a fantastic time!

Cheers

Bfg

Thanks for the reply, it helps to hear from others who have been there.

We are still waiting for a response from the hospital following the PET scan, they said results would be available within 2 - 3 days.  All this waiting around for something to be decided and hopefully, treatment started, is driving me insane.  

Her is bearing up better than I am if truth be told.   I just want them to say he is a suitable candidate for the surgery and chemo and this waiting around not knowing is torture.  The initial diagnosis based on endoscapy, CT, bloods, ultrasound etc is showing localised and 1 (maybe 2) lymph nodes.   If this is confirmed when the PET scan results come through, will this mean he will be offered the surgical route?

I am also left feeling why on earth did we have to go through the bother of CT, ultrasound, bloods etc if it doesn't give a definitive result?  Why not just PET scan straightaway?  All this testing has just wasted yet another month while he gets worse

I have a very close friend whose OH went through this same procedure almost 8 years ago, so she's been a massive help but I am just so frightened and cannot sleep or think properly.  I am trying to keep from him just how I am feeling and am attempting to be positive and strong - it;'s not easy

Thanks for the reply, it helps to hear from others who have been there.

We are still waiting for a response from the hospital following the PET scan, they said results would be available within 2 - 3 days.  All this waiting around for something to be decided and hopefully, treatment started, is driving me insane.  

Her is bearing up better than I am if truth be told.   I just want them to say he is a suitable candidate for the surgery and chemo and this waiting around not knowing is torture.  The initial diagnosis based on endoscapy, CT, bloods, ultrasound etc is showing localised and 1 (maybe 2) lymph nodes.   If this is confirmed when the PET scan results come through, will this mean he will be offered the surgical route?

I am also left feeling why on earth did we have to go through the bother of CT, ultrasound, bloods etc if it doesn't give a definitive result?  Why not just PET scan straightaway?  All this testing has just wasted yet another month while he gets worse

I have a very close friend whose OH went through this same procedure almost 8 years ago, so she's been a massive help but I am just so frightened and cannot sleep or think properly.  I am trying to keep from him just how I am feeling and am attempting to be positive and strong - it;'s not easy

Hi distraught.  This is by far the worst time and is incredibly frustrating, but they will be checking and double checking and discussing plans within the team.  I'm not a medical expert, but my understanding is that if you want to find a problem -  do a PET/mri/ct scan in isolation, they are notorious for false positives and conversely a negative result (confirmation that the embuggerence is localised) still results in a final laproscopy where they will visually check before flot/op/flot).

What you're feeling is normal.  It doesn't really help, but we tend to keep our head down and get on with it - which can be incredibly frustrating for those around us. 

You should get the results soon and the journey will become clearer.

Bfg

Hi all,

We now have the PET scan result and are due to see the surgeon allocated to his case next week.  The result shows what the CT scan also showed, localised and limited to 1-2 lymph nodes.

If, which looks likely, he will be put forward for the FLOT and surgery route, how does this work and how long before chemo begins?  What can we expect by way of side effects? etc. etc.  Any advice and help to prepare would be useful.

He's still managing to keep down thin soups, custard, gallons of ice cream and yoghurt piled  high with clotted cream.  He's also having the protein shakes prescribed by the doctors

Hi distraught,

I hope seeing the recent positive posts has helped you. As I think I said on my previous posts there are slight differences between timings/order of tests. My husband had a longer than average wait until start of treatment - around 14 weeks in total so a long time. Most people seem to range between 5 - 8 weeks. 

Regarding side effects it just depends on the individual but most people seem to get some at varying degrees. The doctor/nurses will give you a leaflet which outline the effects but try not to be scared as it doesn't mean your husband will get all these. Most people find it gets harder as the cycles go on but not everyone. It's a case of  taking it astep at a time. They give you a rapid response card which sounds alarming but don't be as it's more about ringing with symptoms and getting advice so they can help you. A digital thermometer is a necessity. My husband also drank lots of warm water (he took flasks up for nighttime). Also eating as much as possible and exercising as much as possible before treatment starts will help. Also the same during treatment. 

Hope this helps, everyone on here will try to answer any questions.

keeping the faith for everyone 

Milly

Something weird going on with my notifications again- only got one note and look and 4 posts.....

Anyhow

HAPPY XMAS- Millie and Kev. My Nana and half my family LOVE those weekends , Bournemouth , Torquay and Eastbourne being annual haunts for years. - slade been on yet (:

Distraught- Hey. 'Good' news then and he'll be joining the many merry band of brothers on here . Chemo , well I think everyone gets side effects to varying degrees, it is superb  at what it does, cell murder; but with that does come some effects, but as Millie said, you will be given all sorts of support/ help lines and stuff, you will certainly NOT be left to it. Ask away- we are all expert in the lived experience (:. Mine started 5 weeks after diagnosis and after the 2 nd FLOT could eat as normal again, so clearly FLOT destroying those nasty cells. Diet sounds spot on- keep going x As for preparing- just go with it, as everyone is different, but stuff that makes you both happy and smiling like nice food, trashy TV, whatever you enjoy x

Andi- of course you will be down - even though you'll know all the reasons why, it still isn't nice. Human emotions are pesky things to please sometimes ! BUT, you will get home, get on the turkey and trifle, even a pint or four ! (: and before you know it your little great granddaughter will have you wrapped around her little finger tips (: . Remember too you are now and 'expert' member, so all the newbies need you too- as well as the old timers xx

Take care y'all

Keep keeping the faith

Hilts x

Hi Hilts

They have just found me a trolley to put my oxygen bottle in so I can walk alone - too weak to carry the bottle. So I can get more exercise and get stronger - and get HOME !!!

Andi xx

Hi Everyone, 

I have never posted on a forum before so no idea how not to reply to some specific (sorry about that!)

My mum has just been diagnosed with OC with an 8cm tumour, we are going in for her CT scan on Tuesday. It has all happened really quickly and what I am sure always feels out of the blue. She is 69 and lives on her own. I live 2 hours a way and have a one year old so its all feeling quite overwhelming at the moment.

I wondered for my first ask for help if anyone can suggest how I can stop her losing the mad amount of weight she is losing. She is such a lover of her food and she is managing just on complan and watery porridge. I have just ordered some Huel but is there anything else we can do at the moment to help her keep her energy and weight?

We are waiting for the facts too but I could do with knowing what we need to prepare for, she is in denial at the mo (not a bad thing I think) about the care she will need through treatment and what happens next. I am looking at how I can stay with her or she stays with us but she is very stubborn about her independence understandably.

I would love just to follow your stories and connect, learn and hopefully keep positive 

Thanks for reading xx

Jen 

Hi Jen,

Welcome to the club that nobody wants to be in!. I am just over a year down the road with my Dad- have a good read of this thread and there's really useful information from everyone that has gone through the journey or is still on it.

On the point about weight loss - we found that having lots of smoothies (we have a nutribullet) full of different fruits, veg, nuts etc. Is a real good way of getting goodness and quantity inside whilst also being relatively easy to swallow (compared to solid food).

My Dads path was only chemotherapy but as a result of the chemotherapy (and other means) reducing the cancer,  surgery became an option. 

As it's been said on previous threads,  this part of waiting forca 'plan of action ', can be the most worrying as your mind is all over the place. 

Please read through the individual journeys on this forum and you'll get a lot of info and encouragement. 

Lee

Thank you so much Lee, so glad I've found this thread. It's already making me feel a sense of relief, it's such an isolating time. 
thank you for the nutribullet ideas, I didn't even think about that.

I hope your Dad continues to do well and his spirits are positive. 
 

Aha! Hey- Hope

As our Lee says - welcome to the club nobody wants to be in, but hey ho here we all are - The oesophageal cancer club. Glad you've found us x I bet you thought OC was quite rare..... as you can see there are a LOT of us x

I am , like you, the watcher, my then 56 yr old husband diagnosed, literally out of the blue in July 2020. We are out the other side ( for now- I always say that , trying to not tempt fate! ).

This is the very very worst part, the shock, horror, tears, anger,  confusion...... the human emotions exploding everywhere. The unknown. The diagnostic process feels endless. But once you have a plan it does get slightly better.

Like you, we have young kids, tweens, at the time , now very much teens!!!. As for how you'll manage, you WILL xxx

Diet- Anything she can get down . The higher in fat and protein the better.  My husband melted cheese in everything, olive oil everywhere, custard, trifles and loads of cream. He didn't' 'get on' with all the suppliements, so never really bothered. No doubt they would have been more palatable if they were 'beer flavour'! 
We all refer to this diagnosis and treatment as - the rollercoaster - emotionally and physically and everything.

Ask away- whatever is on your mindx

Andi - what a fashion accessory LOL, YOU ARE OFF- mobile- excellent. Don't worry, I have just bought myself a shopping trolley!!! LOL - functional, but I feel like my mother !!!

Hope everyone is chugging along. 
Keep keeping the faith

Hilts x

Thank you so much [@Hilts]‍  I have recently gone through this bloody rollercoaster with my Aunt who passed away last year so its all a little fresh to be back here again with my Mum. It's a horrible horrible torturous time, all the acronyms and jargon don't help!! I am a research fanatic so really not sure if knowledge is power or knowledge is @!£YU?£  Anyway, we are where we are and going to keep us both distracted best we can this next week.

How long did everyone wait from diagnosis/endscope/CT to MDT meeting? I am trying to get a handle on how long I can keep sane!