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 RayB!

I'm thrilled to hear your good news! You are doing so well! I'm a newbie, my husband was diagnosed at the end of October and has completed the first 4 cycles of FLOT without any major incidents. We 'meet the surgeon' on Thursday. Op scheduled for 4th May. I've  been having a few 'wobbles' so your news has really cheered me up and it's encouraging re your weight gain too.

Hilts, your post reminded me of inadvertently going on the dragons in Harry Potter land in Orlando. I too knew it wasn't a good sign when they hosed it down and sent it round to dry. Happy days! I couldn't touch the butter beer! 
 

Best wishes for a continued recovery.

Mandy (aka Milly58)

It's Nice to see people coming out the other side of this.. such a scary disease.

Something I have noticed since October is an overwhelming tiredness. Is this normal? Would this be because of the cancer or something else?

Got my dates for my PET scan and EUS today. Looks like I will be meeting the specialist on the 23rd for staging and treatment plan. It almost feels like a relief that I will get answers rather than a worry about the staging. If that makes sense? 

Hi Ruth & Millie.

Millie- in my experience wobbles are compulsory (:. It is an incredibly weird surreal experience. I still don't feel it is 'real'. Even after going through 8 months of treatment. I even worry to myself some days why I am NOT feeling emotional. Why do I feel normal. We sit down of an evening and I think what just happened- was it real. Then other days I am sooooo angry. I have no idea why I feel the way I do?, is it normal or not.... who knows. I have started to 'go with it' rather than worrying about the in's n outs. I feel the way I do , because I do (: 

Ruth- As you know I am not the victim, just the onlooker. Tiredness is something I can really comment on (:. I've always been what may be called n 'insomniac', I am only thus because the world functions on. 9-5 life. I can always sleep for 8-12 hours, but I would prefer that to be starting at about 4am.....

Anyway , the reason for tiredness, the answer is very easy = who knows (: That is not meant to be flippant, but it could be cancer related or not. How to put this politely- getting older - eke I said it, I am 52 you see and I would say that is more to do with it than anything else. Also look at the last year we've all had, life effectively was cancelled. I would say that a lot of my tiredness is down to boredom and ennui. He gets tired, but he is now post treatment and just 'goes with it'.

It is kinda odd, that everything felt a little better once we had all the staging and plan. Something quantifiable and firm, and end to aim for and tick off. So fingers x. 
 

Daisy71- c'mmon over. 
keeping the faith- hilts

Hi Ruth,

Like Hilts Im an 'onlooker' . It's hard to know re the tiredness as it can be caused by many other things. One thing I will say is that your staging is moving at speed which is good. My husband was diagnosed at the end of October and started his chemo on 29th January so a long time, especially during lockdown. However the staff and care has been very good and thank goodness for the NHS! It is better once you have a plan and something to focus on. I wish I could say/know more but I hope it helps to know others are going through similar and care.
 

Hilts thank you re 'wobbles'. As you know I've experienced very difficult situations before but my husband was always there  to support and this is different. I'm trying to stop researching as much. At least we are able to get out a bit more now before his op. He's tried the stairs and managed 3 mins! Work in progress but thanks for the advice. Off out for a walk .... 

Mandy 

Thanks Millie and Hilts,

I really do appreciate your insights into all this. It has made things easier knowing that we can all support each other as we go through it. 

With the tiredness, you could be right Hilts, I went from a super active and busy lifestyle pre covid to a much more relaxed one. As well as not being able to see friends and family or my partner. This definitely could have brought on some tiredness.

Had my PET scan yesterday, all went well, they even found a vein first time, which is unheard of for me. :) EUS on Monday, which I'm not looking forward to, it will be my 3rd endoscopy in 4 weeks but I guess I just need to get used to them. 

Hope all is going well for you two ladies, and again thank you for the support. It's amazing how talking to strangers is sometimes easier.

Rx

Hi Ruth,

I agree, chatting to others who have a shared experience does help. Pleased the PET scan went well. My husband was 'sedated' for the ultrasound EUS which he found better. I thought we'd learnt enough new terminology because of COVID - clearly not! 
 

Mandy (aka Milly)
 

I know it's funny. I have learned so many new words and procedures the last couple of weeks. 

I'm a bit of a science geek to be honest and only for my career took a different path in my early twenties I always had the want to be a pharmacologist. So if I'm honest I am finding the whole think fascinating, scarey absolutely but also finding out what they can do now is great. 

LOL Millie, I am an ex - Nurse and I have learnt so much new terminology!!!
One thing for sure though, I would never have an endoscopy without sedation- if I'm ever offered that I always take it (:

We went yesterday to see the Oncologist- We/he was discharged .....yippee, BUT there is always one, for once it is for a good reason.. a clinical trial offer. The Aspirin one.  They spent what felt like ages discussing the bio chemistry of Aspirin, him talking about making it as a student and how he will know if he is taking placebo etc. At this point I 'discharged'myself and went for much need retail therapy (: fascinating stuff though, looking at the inflammatory process and cancer cells. I wonder if eventually the key to killing cancer will be found from nature.

I have decided he needs to get back to work soon, when I can home this afternoon he is watching Zulu!!! I do love it at the end when they both salute 'fellow braves' (:

What tomorrow I wonder (:

take care

Hilts

Hilts that is great news. Delighted to hear your hubbie has been discharged. I'd imagine that is a huge weight lifted.

Hope you treated yourself to some lovely treats on your retail therapy trip. From the sounds of it it was definitely well deserved. :) 

Is it ok to ask your symptoms ? 
I go for an urgent gastroscopy on the 17th . 
my gp and upper Gi consultant were all within 5 days and 10 days altogether for the gastroscopy , very quick . 
The consultants exact words were I don't want to scare you but we will be looking for cancer . 
my paper work has just come and it says biopsies . 
ive come on here because I've not heard anything about voice change . 
mine has and if I say more than a few words it strained very squeaky and I feel like it's going ?? 
hope you don't mind 

Thankyou 

Is it ok to ask your symptoms ? 
I go for an urgent gastroscopy on the 17th . 
my gp and upper Gi consultant were all within 5 days and 10 days altogether for the gastroscopy , very quick . 
The consultants exact words were I don't want to scare you but we will be looking for cancer . 
my paper work has just come and it says biopsies . 
ive come on here because I've not heard anything about voice change . 
mine has and if I say more than a few words it strained very squeaky and I feel like it's going ?? 
hope you don't mind 

Thankyou 

Hi Kodi, 

I never mind sharing our 'surreal' experience with full technicolour gory details LOL

The short answer in your case, is who knows- that is really not meaning to be flippant, but there is so much down there , in the gullet, and whenever you go for any procedure they always look for anything and everything and for most investigations like that they tKe biopsies when down there.

I would imagine you have an appointment brewing to discuss it with Doc's.

As for symptoms, if you are talking about oesophageal cancer, they are hugely varied. It is not seemingly a cancer that likes to be consistent in its presentation. I think it would be fair to say, if you flick back through post, most of us hand some trouble swallowing food, completely out of the blue, in our case one day he was fine, literally the next food getting stuck on the way down.

My guy has no voice change as a symptom at all- unless shouting at the kids(:, or TV LOL. Serves him right eh

Hope this helps, but I bet you are in a right state at the mo, wondering what is going on- fear not we are all 'experienced' in the rollercoaster that keeps on coasting- ask away.

best wishes

Hilts

Thankyou for replying . 
I guess it's not long to wait . I hope they tell me something tomorrow . 
I too get things stuck and I had a barium swallow that shows the biscuit they gave me getting stuck but it eventually went down after fluid . 
I get pain in my chest after drink or any food even jelly and custard . 
I'm constantly clearing my throat and cough and bring white up . 
my doctor thought this was drip ? 
My voice goes after food especially . 
I have a lot of symptoms on the list but my Weight stays the same at the moment . 
where do I look at the posts ? 
Thankyou x

Hi Kodi,

So tomorrow is the big day. Fingers crossed for you. Trust me when I say 'I know exactly how you feel' (:

You must come back on here when you know more.
Good or bad, belive it or not this is the worst bit, the not knowing. Once you know either way then you can start 'processing' the whole thing. For us, once we has a plan, things, emotionally became quite a bit better.

We on this board are 'world experts' in the 'lived experience' - such a cheesy expression (:, one of the smart a.... marketing/advertising thingy's.

As for 'old posts' on the board just go back through the pages at the bottom.

If you want to look at a specific persons 'lived experience' LOL, then tap on their name , in blue on the left and look through replies and followed discussions.

I now think I must appear a world b******* expert!!! I only got on this ride in very late July last year!!. I just flicked through my oldies, from the start and they are pretty emotionally dramatic at the start, looking at them I cannot belive it is the same person! This site and board has been incredibly seriously helpful, informative and has seen me through really.

It is great to be able to spill out your thoughts, emotions and experiences'in private' LOL, - I know millions might read it, but it is the anonymity that sets you free to share your thought freely. Who knows we might all know each other without knowing so- if that makes sense(:

So fingers xxxxx for you. make sure you come back with the news- and yes I am a total nosey Parker (:

My emojis never appear well on here, so I just use the sort of smile

Hilts

Thankyou . 
I'll do my best to get some news tomorrow . 
I'm having it done under sedation though . 
I couldn't imagine swallowing a camera when I can't swallow tablets

Thankyou for caring . It's tomorrow afternoon x