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

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 

Hi all,

Firstly, great news Hilts! You definitely seem to be on a quick route. Don't blame you doing some retail therapy - you definitely deserve it. 

We have been to meet the surgeon this afternoon. Apparently two will be performing the operation planned for 4th May. A lot to take in despite my research. 

RayB like you it's likely he won't be allowed visitors so any tips on what to take in would be appreciated. Doogreg did you have open surgery too? 

#keeping the faith Hilts 

Mandy or Milly or maybe Molly

Hi all,

Firstly, great news Hilts! You definitely seem to be on a quick route. Don't blame you doing some retail therapy - you definitely deserve it. 

We have been to meet the surgeon this afternoon. Apparently two will be performing the operation planned for 4th May. A lot to take in despite my research. 

RayB like you it's likely he won't be allowed visitors so any tips on what to take in would be appreciated. Doogreg did you have open surgery too? 

#keeping the faith Hilts 

Mandy or Milly or maybe Molly

Hi, 

still under the surgeons though, but next seeing them in June,

I don't think we asked the surgeons very much - apart from ' get rid' (:

I think it was useful NOT knowing the inns and outs as we felt 'what choice did we have' !

I think or at least hope that you take some comfort/reassurance from us lot on here, Knowing that there are (quite a few of us) are out the other side, in reasonable shape. 
Ask away though for what is that saying ' the lived experience' LOL

I didn't buy much LOL, but I just liked wandering around town, with quite a lot of other humans about, sun was shining and the coffee was hot........a good start (:

hilts

Hi,

It definitely helps knowing that others have come through the op and available for advice. Thanks.

Pleased that you enjoyed your new bit of freedom and it will be interesting to hear how trial progresses. 

Mandy

Hi Milly and everyone else reading 

yes i had the full operation but it was no problem at all , i have been posting my progress since my operation last june and i am getting back to normal now with not really any dramas to report , as i have said to others just ask about anything , its always good to hear from someone who is as far down the recovery route as me and how to deal with any hiccups which buy rhe way are also  a side effect of the procedure , anyway ask away and take care.

Regards 

Douglas

Hi Doug,

So glad to that hear life returning to normal for you. I had my EUS today. Have to say was a little uncomfortable and I got very emotional at the end. Which I felt embarrassed about but not sure many people noticed if any.

They can see the cancer in lining but not too deep which is a good thing. They may have caught it early. They did say they noticed an ulcer at my ogj. But they couldn't determine yet if it was cancer or just an ulcer.

That's all my diagnosis tests done now, I will go back to hospital on Friday. They have said I am allowed bring someone with me for this. I kinda want to go on my own but my friends and family are insisting that I bring someone with me. 

I don't like a bug fuss made. I like to process things and then talk to ones I love with the correct facts and knowledge. I really hate worrying or upsetting them.

Hi Ruth 

You are just at the start of your journey and the next few months will usually  be filled with tests and teratment in pretty quick succession , i have about 30 odd posts going back to last summer about my experiences and even have done reviews on google about my treatment , many of the others who post on here have been through the same scenarios since then  , i started my journey about a year ago so i would expect you to be in the same position as i am today this time next year , i am lucky enough to be able to put a very positive spin on the whole thing but only because of the first class treatment i have recieved from the NHS , trust me a year line passes quickly and i often wonder what the fuss was all about , i am a very happy bunny and have been throughout my journey and hope yours will be the same if i can help at any time with anything you are unsure about just ask , take care and keep in touch

regards

Douglas

Hi Doug,

Thank you for replying. It does help as I'm getting anxious about the op which is scheduled for 4th May. On a positive my husband is exercising and eating well. At the moment I'm trying hard to take a day at a time which I don't find easy. My husband is very much more pragmatic about it all which is good. 

I'm pleased that you are feeling much more normal now. 
 

Thanks again.

Milly 

Hi, 

Ruth- you are soooo like me, I hate fuss and if I am going for 'that sort' of appointment, I would always want to go on my own. Exactly like you, I like to process my stuff first. I like to 'get it' first, then tell others or not tell them, depends on what is going on. No right or wrong way I guess, 

Glad you are going on Friday to get the verdict. They will also presumably give you the plan. It is weird, we felt a lot better emotionally when we knew where we were going.

The emotional stuff is really kicking in with us now ! Now we've been discharged from most stuff. The strangest thing, I am getting upset about good memories!!! , so is he. Thinking about past holidays n stuff. Also a really weird one, all the close  relatives who are no longer here, how much we would have liked to have chatted with them about it!!!!! What is that about?

Millie 58- of course you are anxious. My brain was like a washing machine on spin cycle with all the thoughts. The best 'remedy' for me was always ( still is ) distraction. I was at work the day he was on the table !!!!! I was probably as useful as a chocolate fire guard, but my colleagues knew what was happening and no doubt shielded me and carried on with total normality, I drove him in , in the morning, by the time I got home, within the hour the hospital phone to say it was all done......... don't ask me if it was the right thing to do, but it worked for me.

Watching cr** on the TV is quite a good distraction , as is clearing out wardrobes etc. Anything really that focuses you away from the op.

Anyhows. Off to 'distract' myself now (:

Hi Hilts,

Thanks, I am not working at the moment so I will need to sort a distraction for the day. Our eldest son has arranged to have some time off so I'm not on my own. Think we will go for a long walk! So difficult with COVID. Hopefully that situation is easing. Trying to keep busy before 'the day'. 
 

Hightened emotions bring back all sorts of thoughts. I guess you are at the stage where you are trying to assimulate the past 8 - 9 months. I'm pleased you are returning to some normality, I truly hope we can do the same. 
 

keeping the faith to use your phrase.

Regards to all

Milly