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osophagus cancer diagnosis

12 Apr 2021 17:41 in response to Milly58

Hi All

How is everyone ?

Well after another week long stint in hospital due to an infection I was back on track, then the 2nd vaccine, last Thurs knocked me back again! Who said this journey was a rollercoaster, was it you Hilts ?

Anyhow today was results day!!!!! Surgeon knows im his star pupil, so was very positive and even excited to tell me that the results back from Pathology were even better than he had expected.He was also impressed at my weight gain, back to pre op weight or as I call it my fighting weight lol. It was good to hear there is no spread including the piece of lung they took as it looked 'dodgy'

So now just the 2nd round of chemo (FLOT) to look forward to. Still have this horrendous cough which made me vomit (first time since op) Fri night. I made the decision to leave feeding bag off for that night and was more settled. Spoke to the dietician who was happy for me to do every other night from now on, playing it by ear for now, but best nights sleep ive had.

Next appointment 3 months.

So what do you all think?? Its took all day for it to sink in,weird feeling getting good news ; )

osophagus cancer diagnosis

12 Apr 2021 18:35 in response to RayB

Yaaaaayyyyy, 

You're back. Fantastic news on the old histology- NO SPREAD.

i know how you feel ( sort of- the onlooker) , so much bad stuff, then bingo, it starts to turn upward, you almost feel like saying "ye whatever" as so much of the earlier stuff is pants. Weird. Also , I think we were bracing ourself for more doom n gloom, it's not like you don't belive them, but we were waiting for a BUT. Very strange when there isn't one.

I think infection, somewhere in the bod, is pretty usual after this sort of thing. Considering what is done. Husband had a bit of chest post op, but nothing major.

Now , the cough, I swear I am going to do for him myself (: (:. The night feeds certainly made it worse, but it is still ongoing, not as bad, but bad for me.......medics are not concerned, say all the bod takes months to settle down, have told him to eat less at meals... hahahaa. They say it is post nasal drip, there is certainly a lot of that....urg. But they have put him on a steroid inhaler, just to stop all the irritation vis a vis, will stop irritating me!!!
 

You have probably seen a few newbies joining the thread. That  will be me ' inviting' people over, I know it is your threat I have hijacked. I just thought that I see so many 'single' posts about OC that it would be good if we were all on same board, for better or for worse.

As for the weight, it was the 2 nd lot of FLOT that caused the loss, with rubbish appetite , nausea and smaller stomach. We used about a week of overnight feed, but just half of what we used before. It was just to take the 'pressure' off having to eat when feeling pants. His weight is stable again now at 89kgs (95kg at diagnosis and pre op). We found the jej tube quite useful for shoving water down, to help with dehydration after the chemo. Not prescribed, our own idea, but really did the trick.

yep, I think rollercoaster was something I coined, probably not original (:

We have been on several over the years, but one of the absolute worst ones was in Disney. A turtle like thing, that spun on its axis as well as going upside down, round and round, with all images/film on the wall of the ride. The car in front of us was having sick hosed off it !!! That should have been fair warning. It is far far worse that that Oblivion. Putting this process into the equation, husband reckon the turtle was worse!!!!

We are in the wtf just happened stage.(:

Our final decision on our celebration for getting through this is a new tattoo each- can't wait. We - well more me, i do like the old tats(: not the love/hate on the knuckles type though- LOL sorry if you have them!

take care

hilts

osophagus cancer diagnosis

12 Apr 2021 19:36 in response to RayB

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)

 

 

 

osophagus cancer diagnosis

12 Apr 2021 19:36 in response to Hilts

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? 

osophagus cancer diagnosis

12 Apr 2021 20:33 in response to Ruth79

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

osophagus cancer diagnosis

13 Apr 2021 09:04 in response to Ruth79

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 

osophagus cancer diagnosis

15 Apr 2021 12:55 in response to Milly58

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. Happy 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

osophagus cancer diagnosis

15 Apr 2021 13:23 in response to Ruth79

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)
 

 

 

 

osophagus cancer diagnosis

15 Apr 2021 13:36 in response to Milly58

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. 

osophagus cancer diagnosis

15 Apr 2021 19:36 in response to Ruth79

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

osophagus cancer diagnosis

15 Apr 2021 19:59 in response to 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. :) 

osophagus cancer diagnosis

15 Apr 2021 20:58 in response to Rivers1234

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 

osophagus cancer diagnosis

15 Apr 2021 21:13 in response to Hilts

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

osophagus cancer diagnosis

15 Apr 2021 21:58 in response to Milly58

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

osophagus cancer diagnosis

15 Apr 2021 22:20 in response to 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