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.

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!

Hey Hope x

Yes, there seems to be a 'lot of it about' , I don't know what on earth is going on with cancer- it seems to be everywhere! - but I suppose we as a human race have a handle on many of the 'old illnesses' so I guess people are living longer and better, giving the old C time to move in. I am a bit of a pragmatic type of chick and still retain a sense of humour, even in the darkest of times (: essential I would say for this rollercoaster! 
Time to treatment etc. It very much depends . We got 'lucky' (: ours kicked off the same time as Covid, so everyone was focused on that, so I guess people just weren't being seen or referred! So E day ( endoscopy day) was 29th July, then CT Scan next day!! I thought OMG - that's it, but no, ct were quiet.got a phone call of the nurse at MDT the same day!!! You can imagine the panic! THEY Gave us 3rd August to come in for the 'chat', we delayed to the 8th as we were going on holiday! - what else on earth are you supposed to do eh (:. So, went along, told us what they thought , staging etc,and what they were going to do, dependant on upcoming PET scan . Started chemo 5th September. Finished the whole thing on 4 th feb - I think.

DONT LOOK AT GOOGLE! LOL - it is a horror show, the worst of the worst case scenario in all aspects- we all do though (: if any of us took what was fact on the net, we would have all popped off in a week- even the medical sites are bad bad. For me, it bears NO relation to the reality at all- don't get me wrong , it is no fun, BUT, honestly, the doom and gloom on there is enough to finish anyone off.

Keeping sane! Good,luck with that ! Don't even try too hard- you are human, with all those human emotions. If you need a meltdown, have one, gawd knows , most of us on here have had several.one posted made me laugh out loud once, posting "what not to say to cancer patients" , you know the sort of things other people say trying to be 'helpful' I still laugh at it now, it is on here somewhere- lord knows where though. I love 'how are you coping' and 'stay strong' - what on earth to either of them look or feel like- sorry , I am quite a literal chick'

Anyhows, snowing here, and kids are chucking it around and husband has gone out 'posing' in his dressing gown. Arrrrg

Keep keeping that faith

Hilts x

PS- I note your Mam is on the old complan- just my humble opinion, but gawd is it rank!! Like most of the supplements- you think modern medicine would have advance to things like mohjito flavour or something!! My husband just stuck to what he fancied, but modified.

You take your eye of the chat, and look what happens…..

Hi Andi – never have I been so utterly delighted and chuffed to bits to read your post!!  It’s nearly 9 months since my op and you sort of forget that it’s quite an ordeal at the time and for some even more so. Well done on getting this far and I would like to apologise for the “minced and moist” diet that you are moving on to – I still wake up in a cold sweat having the occasional nightmare about it. The name of the game now is “baby steps” – each day is incrementally better, and some days you will feel rubbish – but it will improve and you will be home for Christmas!

Hi Scott – post op, they are ultra cautious and will keep a very close eye on things – I hope your dad is improving now.

Hi Lee – it’s back to baby steps, but his steps look like they are following mine and there will be incremental improvements.  I too was in surgery for longer than expected (I think I mentioned on one of the threads, as it was quite funny (but not at the time)).  My memory was arriving in ICU post op to have a phone thrust in my face to tell the missus that I was still alive. 

Hi distraught – great news on the PET scan.  It all sounds very similar to my results.  He’ll probably have a laproscopy booked in too as a final, final, check and then you will move over to the oncology team for the first round of FLOT.  Assuming things haven’t changed with the “gold standard” for treating this, it will be 4 cycles 2 weeks apart, about 6 weeks past the last cycle for surgery, and then the final 4 cycles starting 6 weeks post op.   The support teams are phenomenal – and they will probably scare the proverbial out of you with all of the possible side effects, and to be honest I would say that those of us who have been through it on this chat have had almost the full range of possibilities between us, which is not meant to worry you – but just to say that we all react differently and with varying degrees across the symptom range.  It’s a case of buckling up for the ride with the first one being the worst – primarily because you’ve no idea what’s coming and his mind will be working overtime.  Keep the fluid levels to flush the stuff out the system, and take the medication they offer.  Talk to the team about any side effects (most of the medication they give you acts as a buffer for the worst of it) as they can tweak things around.  And don’t forget to ask away here too- I’m sure we’ll help where we can.

Hi hopingforhope86 – there should be an upper gi team who (you may need your mums permission) you can contact on anything related to timescales.  But your MDT will be “weekly” so often it depends on when you’ve had the scan as to when they discuss the results and get back to you with the next steps.  And as Hilts says – any high fat, sugar type food – this is not the time for “healthy” eating. 

Hi BFG

Thank you so much for your reply. I start minced and moist tonight - even the name !!!!!!! Bad day today as told I will be here AT LEAST another week - I so want to go home. The 'up' side is I've gone all day without oxygen and still over 94%. They are making me keep it in over night - but hopefully nearly gone. How are you coping - are you eating OK  - how was the second round of chemo?? 

At the moment I feel as if this will never end - 9 weeks so far - just depressing!  Anyway - must put my 'feed' on - another one of the joys. Apologies if not an up beat message - feeling very down today - as you say - good days and bad days!! 
 

Andi x

Hi Andi- are you kidding. I challenge anyone to be upbeat on the minced and moist. The best thing is that's its the sign of massive progression and brings you closer to going home. 

There is no doubt that the relationship with food changes, but nothing is off limits now - big 3 course meals are out,  but that's about it. 

2nd round of flot was pretty much the same side effects as the first but tended to last a little bit longer - so 4 days of being a GOG (grumpy old git) rather than 3. How did you get on with your first round?

Hi everyone- update:

Andi - sounds good news as though you're steadily going in the right direction, keep at it.

Ok...my Dad has has 2 leaks post OP- 1 leak the following day and 1cleak a couple of days ago. This morning he was sent to the endoscopy department to have a clip inserted in his reconstructed esophagus to stop the leak. The docs said 1 hour and then back on the ward. 3 hours later we was told that Dad was in intensive care again due to his heartbeat being very high. I have just been back to hospital and he is ok but very weak and p***** off!.

The nurses have said the doc/surgeon will decide what will happen tomorrow. Just as we were feeling positive as he was taken to the ward...he's back in icu. I guess this is the 'rollercoaster ' journey. 

Hi everyone- update:

Andi - sounds good news as though you're steadily going in the right direction, keep at it.

Ok...my Dad has has 2 leaks post OP- 1 leak the following day and 1cleak a couple of days ago. This morning he was sent to the endoscopy department to have a clip inserted in his reconstructed esophagus to stop the leak. The docs said 1 hour and then back on the ward. 3 hours later we was told that Dad was in intensive care again due to his heartbeat being very high. I have just been back to hospital and he is ok but very weak and p***** off!.

The nurses have said the doc/surgeon will decide what will happen tomorrow. Just as we were feeling positive as he was taken to the ward...he's back in icu. I guess this is the 'rollercoaster ' journey. 

Hi Leechap

So sorry to hear about your dad - it's just awful when you think things are going well - it seems to be 2 steps forward and 3 back. I just feel institutionalised - they say at least another week here but every day is like a week. 
 

hooe all goes well with your dad tomorrow 

Andi xx

Hello All,

A settled day for dad, no progress but not any worse! His kidneys seem to haven taken a hit, but also common for a big surgery? 
 

Sorry to hear your dad is back in ICU [@leechap]‍ , this is a certainly a rollercoaster and I know how you feel! 
 

[@Andi1947]‍  it must be so tough for you but please take strength in knowing that you here fighting on is giving me hope at the begining of this surgical journey! I told my mum to tell dad today that Andi's back. If you can do it he can too (big love heart emoji!)

So many new OC members and as an onlooker it's so hard. But as all have said the NHS is a wonderful thing and we have so many skilled professionals who really know what they are doing! We just have to "Keep the Faith" 

Hi all,

Well it's been busy on here. Everyone's journey is different so please take heart that it's not easy but doable. For the 'newbies' on here if you read through the threads you will find lots of info. The timescales vary my husbands start of treatment looks like the longest on here about 14 weeks from  27th October 2020 until 29th Jan when chemo started. As BFG said weekly MDT so due to timing we sometimes had to wait almost two weeks between tests. However the NHS is brilliant and of course the second lockdown came in during all this. 

Andi/ Scott/ Kee as I've said before my husband was 5 week. Like you guys one step forward, two back. Then a considered risk sending him home to recover enough for a third emergency op! He also had oxygen for a long time after the internal bleeding/pneumonia/pleural effusion/pleural empyema! So Andi don't apologise for being down - you must feel institutionalised! 
BUT here we are in Torquay on a Turkey and Tinsel weekend!

Im not going to say it's been easy for him. As BFG said relationship with food changes and this has been a challenge this weekend. Evuhavibg 3 courses and my husband one but he's coped. Being away in a group has been fun al ex RR employees. I tell you this to give you all hope.

keeping the faith for everyone and as RayB says keeping it real

Milly

Andi

Thanks Milly. I've learned so much already, I'll be doing lots of background reading for sure. 
 

the conversations about her smoking have picked up - any tips to share on this front? She's smoked since she was 14 and also has COPD so obviously it's doing a lot of damage already. Can anyone share the impact of continuing to smoke or anything that has helped them stop. I have to say the health scares aren't enough, neither are the vapes etc etc. I think it's more about her managing anxiety and obviously that is at the highest at the moment. 
 

Love to everyone! 

Hi leechap - they certainly monitor everything post-op and went into a complete panic when my heart-rate wouldn't come down one day.  Lots of junior surgeons, doctors and nurses were flapping so much, they nearly took off. My surgeon swept in, decided to treat as an infection - took me off the oxygen mask, put me on an antibiotic drip - blood tested me for all kinds of stuff which had to be cultured for 24 hours before it was shown to be an infection.  All part of the rollercoaster, and as I like to say - with the odd bumper car thrown in for good measure.

cheers

bfg

Hi Andi - 2 steps forward, 3 back - sounds familiar - but you will have days when its just the 2 steps forward and after a while you realise that generally - it's going forward.  :-) 

cheers

bfg

Hi Scott - the GA messes the body around no end - even my missus who was only out for an hour a couple of weeks back took a few days to get over it.  I don't know whether he is on a liquid diet yet, but when he is all of the water that will be drunk should help.

cheers

bfg

Hi hopingforhope - you already know the answer to this one.  All of the current testing regimes are to see if your mum is suitable for surgery.  If she is, then the surgery is long at between 6 - 10 hours and involves deflating one of the lungs. 

There is a fitness test prior to ensure the heart can withstand the surgery and a significant risk of pneumonia afterwards.

The majority of the recovery from the op is in the 6 months after with incremental improvements for another 6 months after that.

I wouldn't like to pre-judge the MDT team, but I would say that it would be a factor in determining suitability for surgery assuming everything else is ok.

Thank you for this - didn't know any of this info yet so I'm feeling more prepared and it'll help me have the conversations with her

Hi BFG

I know - but day after day sitting here in hospital is soul destroying. I actually woke up crying this morning - never happened before.   Having a bad day - but I'll pick myself up again. 9 weeks today since I came in - the first just over 7 are a bit of a blur in ICU, but on the ward the days are so long!! 
 

I know I'll get there - it's because I feel so much better that I'm bored!!

Andi xx