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

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 

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. :)