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 All

Jae

Yes, welcome to the rapidly , ever growing club, as I told my husband, he is seemingly "common as muck '!!!! LOL- sorry, I think I'm funny..".......

T2N2.... so NO M's , great. Seems to be around the mark of many on here. I would imagine you'll follow the same pattern of most on here nuke, chop, nuke- not that I have a crystal ball or anything.....

Completely  off subject-  but what is it with sunny days and **** power tools!!!!! Arrrg I swear , trying to chill in my garden and some ***** has spend the last HOUR whining away arrrgg. 

Anyhows, ye I totally get what  your relations are are going through. I guess for me I was about trying to make sense of it, even trying to find someone, something ,anything,to blame, the anger- had to be somebody fault surely?? Questioning- is this actually really real, the Dr have got it wrong why us, etc etc etc. All I wanted was to make it go away, how dare it 'creep into our lives' . These emotions changed virtually on an hourly basis LOL. They have changed over time, now we sit and think WTF just happened! So there will be many up's ,downs, twists and turns on this bonkers rollercoaster, but know that we are all 'timed served' experts !!!! LOL

yep , BFG another milestone ticked off for us- who'd have thought a year ago that any of us would be talking about ' how good food tastes' something that we all probably took for granted, but now every mouthful,successfully  enjoyed (without, gagging, vomiting, y'all know the drill ) seems sooo good. And for those , not yet there, you will soon enough.

Right, I'm off to see who is making all this **** racket........

keeping the faith ( with gritted teeth at the mo!)

Hilts
 

Hi Hilts and everyone!

After 5 weeks in hospital 2 in ICU 2 in step down (HDU) and one on the general ward my husband is home!

What a journey he's been on literally to the brink and back! He still has fluid in his chest cavity but it was decided coming home may do the trick of his body absorbing it - so fingers crossed. He is to be reviewed  in respiratory clinic sometime next week. Can't praise the staff enough. What happened was so unfortunate to say the least but they told him they'd save his life and they did. The consultant has been brilliant- rang me so many times and always honest but so dedicated - he came in over one weekend to see Kev when he wasn't even on call. So as bfg says slow and steady and as ever 

Keeping the faith,

Milly

Ps Glad you enjoyed Sutty Hilts and your husband is doing very well, hope procedure goes smoothly.Strange I feel I'm beginning to know you all and your support has been invaluable. Thanks!

Pps I was pressure washing yesterday hoping for Kev's return! Lol

Good to hear he's home Milly, I bet he is enjoying his own surroundings!

Lee

Hi Lee,

Thanks and I hope your dad feels better this week having a rest from Chemo will be good.

Keeping the faith

Milly

Yaaaayyyaaaa. Millie !!!!! He's home.

such good news.

i hope he appreciates all the weed slashing you have done (:

All a bit surreal for you both. Probably sitting there looking at each other and thinking ' WTF just happened' it is quite difficult I found ,to find stuff to talk about that wasn't about 'it'.

As I have said many times on here, " I am so glad they saved my husband, so I can now sometimes cheerfully kill him myself ' LOL. 
Talking about 'saving'. I know Millie, the care and dedication of the Surgeons, oncology and the tens of others who all made it possible is incredible. I get really really x100 miffed at our disgusting media, always dissing the NHS, picking holes. We have had nothing but brilliance throughout. I mean , imagine sitting there for 8-10 hours operating on someone, maybe some of those disgusting media specimens should try doing a worthwhile job themselves!!

While I was going mad at the start, I was surfing ( as you do, just to wind myself up even more!) . A lot of sites are American and always talk about 'cost', bless 'em. I worked out , as you do, that all in what our folks have had in terms of treatment would cost upwards of $ 200,000 !!!! No wonder their survival stats are rubbish! If you can't afford , you don't get . The media want to remember that when they are moaning.

ooo- I do like a good rant (:

I totally know what you mean about 'knowing' folk. I feel I know you too and others.  We have shared our deepest darkest times and know exactly what it is like. Sharing our thoughts with 'strangers', but for me that has been the 'beauty' of this board, we can spill in total privacy, well, anonymity and for me it has been more than extremely cathartic and helpful

Sutty was indeed lush, totally un gentrified and Mablethorpe ,again totally un reconstructed . I let rip in the arcades- god it was fun spending millions...... of 2p's that is.

Anyhows off now to keep the faith. (:

Hilts

Ye-  BFG

it is a bit of a 'twighlight zone' time for sure.

When he was feeling pretty duff after the 2nd and 3rd I kept the mantra going "only 4 weeks to go, the done, finito" it is such a weird thing. After ' living the dream' for 9 months, then bang it is over. 
we were both a bit wobbly for a few weeks after , almost looking for thing to do, had we forgotten something etc etc. It is soooo all consuming , both physically and mentally that it is a bit of a 'let down' - don't know how else to put it-when it finishes weird or what. It's like your life has been strictly regulated for nearly a year, then you are free again. We are certainly moving through the emotions, but the holiday was a real treat.

take care and keep the faith

Hilts

Yes they've been brill!  Kev was aware when they took him back to ICU and were trying to figure out why he had such a rapid deterioration. A surgeon who was with him said 'stay with us Kev and we will save your life'. Gives me goosebumps just writing it. It's been a long five weeks that's for sure. Hoping the fluid goes and we can move forward. He had pneumonia as well. Certainly got his money's worth! 

Keeping the faith

Milly 

Great news Milly!

Delighted he's now home, it will make a huge difference to you both. 

cheers

bfg

Thanks! First day sitting in the garden.

Pleased to hear that you are almost there Bfg!

Keeping the faith

Milly

Just poppy by to say Hi.

I received a diagnosis of endocarcinoma of the oesophagus on Tuesday 8th June.

feeling pretty numb and trying to get my head around it.

initial CT doesn't show any growth into surrounding organs, but PET CT next Wednesday to check.

53 year old mum of 4 adult children and Nana to a beautiful granddaughter.

Just poppy by to say Hi.

I received a diagnosis of endocarcinoma of the oesophagus on Tuesday 8th June.

feeling pretty numb and trying to get my head around it.

initial CT doesn't show any growth into surrounding organs, but PET CT next Wednesday to check.

53 year old mum of 4 adult children and Nana to a beautiful granddaughter.

Welcome Pascha, 

I was diagnosed, officially, same day as you so I guess we're "unlucky buddies". Best wishes for a speedy treatment and recovery. 

I'm waiting for my referral appointment up to a London cancer centre where a PET scan is in my future too. 

Jae 

Hi Pascha

You are a lot braver than I was - it took me a few weeks on the rollercoaster, before joining this eclectic group.

Take all the positives - ithere are treatment options, the team looking after you have walked this path many times and will provide the very best of care.

Feel free to rant and rage on here - remember you are not alone in this, and as you will find out about us we are all at various stages in the journey.

bfg

Welcome Pascha, I can only reiterate the previous messages...

Lee

Hi Pascha,

Firstly, sorry to hear of your diagnosis as Bfg and Lee said 'Welcome' to what Hilts calls the Oesophagus club!

You are braver than me too as, like Bfg,  I didn't join for a while after my husband's diagnosis. We are a friendly bunch with different stories and experiences but there is a lot of positives too. I was overwhelmed at the start but my husband was more pragmatic. Googled lots - mainly NHS as there are  lots of American sites but also remember that the statistics are out of date and cover a whole range of people including age, general health etc all lumped into one.

Everyone reacts differently but I have found 'walking the line' the best way I try not to look too far back or forward - easier said than done at times. I won't waffle anymore but this group of 'strangers' who I now feel are fellow friends have helped me enormously as a patient's wife and I hope you find it helpful to as you start your own journey in this theme park! (Mainly riding a rollercoaster with a few dogems thrown in as I think Bfg said?)

Keeping the faith (Hilts got me doing this!)

Milly

Welly said Milly!

Well said Milly! Sorry for the misspelling! I am away for a night and slightly drunk ! Have a good day! It's a good idea to 'get away from everything for an occasional dat'

Lol Lee,

You've made me laugh out loud literally - yes some 'down time' is good and a drink or two!

Enjoy!

Keeping the faith

Cheers!

Milly

My husband was diagnosed same staging as you in July.

how are you doing?

T

Hi I've been following these threads with interest as I was diagnosed with OC in June 21 

I went through the initial four rounds of FLOT then had my surgery on the 9th November and I'm now 8 weeks post surgery 

I went home after two weeks but was readmitted a week later as my wound on my back became infected and once that happens they begin to suspect a leak, however thankfully that was not the case but meant I was on fluids longer than I would have liked, I managed to get home just before Xmas and I'm recovering well.

Diet wise I'm on soft and trying to gauge the size of my stomach which is trial and error, my appetite is good and I've began to put on some weight as I'd lost around two stones after the operation.

exrecise wise I'm managing to get out and walk around 2 miles a day, intention is to increase this to 4 with the help of my beloved hound.

ive a follow up appointment with the surgeon coming up very soon, I met him in hospital and he said "we got it all, it's all gone, excellent margin and we removed two LN" he did not mention any follow up chemo so was wondering, do they offer this to everyone or is it case by case? 
 

best wishes to all on this group and their individual journeys, just by reading it has helped me on my journey

regards

Tipo 

Hi Tipo,

Firstly as we all say welcome to the group. It's not one you would choose to belong to but I'm glad reading our posts has helped you through an extremely difficult time in your life.

In answer to your question 

My understanding is the usual procedure is FLOT/OP/FLOT.  The second FLOT is usually given within 12 weeks of the op. If you've read my posts you will know my husband's journey took some unusual twists and turns but he was still offered FLOT at 12 weeks post the Oesophagectomy and 5 weeks post VATs decortication on his left lung.

Some choose not to have it and Andi recently posted she wasn't able to have it due to her complications following surgery.

You sound like you are recovering well and are making the most of being able to get out and walk. My husband is now upto 5 miles walking. He had his fIrst op (Oesophagectomy) on 4th May. Third op on 1st July. He was unsure whether to have post op FLOT due to everything he'd been through but was offered it and advised it was worth doing so he had it. His pathology results were T2 NO MO and surgeon said they got it all with good margins. 37 LN removed all negative. The actual op was text book. 
As we all say it's up to the individual and the Oncologist is the best person to advise. My husband said it was harder the second time but he completed it. We are off up the peaks next week which is amazing after what  he's been through! Everyone on here has their own story but this thread has been a lifeline for me as the onlooker.

Best wishes and if you feel able to please post an update. We all care about everyone on this journey even though we've never met.

Keeping the faith

Milly