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

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 Googled lots - mainly NHS as there are  lots of American sites but also remember that the statistics are out of date and cover a whole range of people including age, general health etc all lumped into one.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

Hi I was told Stage 4 spread stomach nodes. Chemo didn't work as allergic reaction too bad 1st session so Consultant said no to anymore as it would kill me. Inoperable as stomach nodes to close to aurota however not all bad as radiotherapy went well to shrink tumour an within 2 weeks of finishing was able to drink an eat anything (chips my new favourite food!) this was done in April so mentally am good so do think once eating an drinking sorted makes one hellva difference to health and mental well being. Been out lots for meals an off to Burnham tomo only worry is get CT scan results tomo but as been pointed out if eati g an drinking well must be a good sign so I am hopeful. Keep well everyone x

Have a great time in Cornwall Jae, and in Burnham Janice.

Just to bring a little levity to our club, my husband is determined to get me 'surgery fit' so off we went for a 10 mile walk from Yarmouth to Freshwater Bay and back, am now lying down in a dark room with a very large G n T, keeping the ......zzzzzzzzzz.....

Gx

I've only been to work and back......

2 more newbies in our club!!!!! Janiceme & Alex. Welcome.

Now, gents (Jae and BFG). Size, I cannot compete with  either of you, I am 5ft 1 inch and size 3 feet, so basically cut yourselves in half and that is about the size of it LOL. My Dad reckons I would make a good model...... for dwarf and / or doll clothes!!! He too thinks he's funny........cheeky ***.

Janiceme- my husband had a horrible allergic reaction to oxiplatin. I guess the body just thinks, "nope, not having this"- but there are LOADS of other tasty chemo treats available.....glad the radio has helped. My goodness what you said about getting food down and how good that feels- absolutely with you on that one. My husband was clogging at every meal, even soft stuff, then after the 2 nd pre op chemo all 'gone' could & swallow again- I cannot even begin to describe the feeling for both of us to know that 'murder' was working. He actually said 'food has never tasted so good' (:

Jae- don't say  not to worry about you.... we do and will (: that is the whole point of this board.Wearing Big pants are fine, but it is the strangest thing that even though we are all strangers to each other, I have found this site/board so good for the soul because we all 'get it'

LOL Tabnabs- I feel your pain.....I loath exercise in any form- As many know I am an advocate and follower of the 'Keith Richards health promotion plan' ((((::::: One 'exercise' that husband 'invented' for himself was walking up and down the stairs, not at speed, just as you normally would, he was working not so much on fitness , but stamina. I managed 1 minute and had to go for a lie down & cake,  he worked up to 12 mins ! OMG- if that were me I would have to call for emergency services ! LOL

You folk have lovely hols. We went to Lincolnshire coast over whitsun week, a part of the world I have never been to.. we had the best time, eating fish and chips without any trouble, chucking millions (of 2p's ) into the pushers.

We are on tenterhooks waiting to see if we can go on our summer hols. The first foray out of UK since diagnosis and treatment end. After the year we have had, I really need to warm my bones (:

Keep the faith folks in whatever you are doing.

Hilts

I've only been to work and back......

2 more newbies in our club!!!!! Janiceme & Alex. Welcome.

Now, gents (Jae and BFG). Size, I cannot compete with  either of you, I am 5ft 1 inch and size 3 feet, so basically cut yourselves in half and that is about the size of it LOL. My Dad reckons I would make a good model...... for dwarf and / or doll clothes!!! He too thinks he's funny........cheeky ***.

Janiceme- my husband had a horrible allergic reaction to oxiplatin. I guess the body just thinks, "nope, not having this"- but there are LOADS of other tasty chemo treats available.....glad the radio has helped. My goodness what you said about getting food down and how good that feels- absolutely with you on that one. My husband was clogging at every meal, even soft stuff, then after the 2 nd pre op chemo all 'gone' could & swallow again- I cannot even begin to describe the feeling for both of us to know that 'murder' was working. He actually said 'food has never tasted so good' (:

Jae- don't say  not to worry about you.... we do and will (: that is the whole point of this board.Wearing Big pants are fine, but it is the strangest thing that even though we are all strangers to each other, I have found this site/board so good for the soul because we all 'get it'

LOL Tabnabs- I feel your pain.....I loath exercise in any form- As many know I am an advocate and follower of the 'Keith Richards health promotion plan' ((((::::: One 'exercise' that husband 'invented' for himself was walking up and down the stairs, not at speed, just as you normally would, he was working not so much on fitness , but stamina. I managed 1 minute and had to go for a lie down & cake,  he worked up to 12 mins ! OMG- if that were me I would have to call for emergency services ! LOL

You folk have lovely hols. We went to Lincolnshire coast over whitsun week, a part of the world I have never been to.. we had the best time, eating fish and chips without any trouble, chucking millions (of 2p's ) into the pushers.

We are on tenterhooks waiting to see if we can go on our summer hols. The first foray out of UK since diagnosis and treatment end. After the year we have had, I really need to warm my bones (:

Keep the faith folks in whatever you are doing.

Hilts

Hi and a shorty too! 5.2 with eyes of blue lol. And most people think we are cute so will take that! My consultant only gave me half the dosage and seems to think any type will not do me any good health wise but as the radiotherapy worked on tumour as you say must be other options so will find out tomo as CT results. Forecast not too bad for weekend showers but think we know to take our chances with weather but still nice break. As I have been shirt of breath lately we have hired 2 motability scooters lol so probs look like Madge out of Benidorm lol. Keep well every one out there fighting xx

Hello to everyone

Dear me this has been busy since I last visited, welcome to the new members of the rollercoaster ride. I have been on my next dip of the ride , had my second round of post op FLOT made it 10 days after treatment and ended up in A&E again with an infection and fever with uncrtrolled shivering, moved from A&E to EAU ward where they decided to remove my Pic line and then the consultant hit me with what are your thoughts on resuscitation ie. DNR scary is not the right words, moved from that ward to an haemotolgy ward where I spent another 8 days and they discovered a blood clot in my arm, I have a appointment with the consultant next week, think my body has had enough of this chemo, time to try and move on. 

Everyone one on this ride, keep the faith and stay strong 

Hi Ray, you have had a rough time! I get what you mean about your body having had enough chemotherapy...its catch 22!

It sounds like you are slowly going in the right direction- be strong and good luck. 

Lee

Raaaaaaaay

That;s not just a rollercoaster, that's the twister on the rollercoaster with the dodgems joining in for good measure.

I can't believe how common the blood clots are - mine kicked in a few days after the first cycle back in December, so they whipped it out (the picc line) and stuck it in the other arm a couple of days later, with blood thinning injections twice a day.  It was attributed to the picc line rather than the chemo.

But the time you've had with the infections - and kicking in so long after the chemo cycle.  I hope you gave the consultant a long list of people you wouldn't p'ee on if on fire, never mind resuscitate.

i'm feeling post-flot guilt - it's been a week since the pump was taken off and the picc line taken out, and last night was my last filgrastim.  The whole cylce hit harder than the 1st time, but nothing compared to what you're going through.

So - keeping the fffaith and staying strong and remaining the bfg

Yaaay Ray your back.

Blimey though, you have been through it, but you are still on the ride with us all.

The body hates all these lines, it tries it's best to  get rid of them any what it can, so clots, infections, are pretty common. Husbands was starting to play upon 7 th cycle, but it did make it to the end. His arm is still sore where it was. Horrible things, but no real alternative given that amount of juice in one go.

Husband didn't have the final 2 oxiplatin due to a proper anaphylaxis!!. I think I read somewhere that only 40% complete the 8 cycles for one reason or another. As I remember you had a good pathology and I totally get where you are coming from when you say enough is enough.

BFG- so now you are done too. Now the recovery really begins. In terms of the emotional and physical. From now on it just better with no planned slapping down. Enjoy.

As ever, keeping it up and keeping the faith

Hilts

Hi all,

Firstly welcome to the new members of this Club which no one wants to be in but has helped us all.

My condolences on the loss of your husban Alex. No words are adequate fior such a huge life event as losing your loved one.

Ray what can I say - your path has been complicated too. You're still here and ffff to DNR!

You have gone through such a lot and you know, along with advice fro medics, what your body can cope with. 

You may have seen from my posts that my husband is on the snakes and ladders board too! A CT scan tomorrow and hoping for some good news. At least his vasculitis is going! I send my very best thoughts to you and your family for a smoother journey on this long road.

Lee I hope your dad is feeling better. So tough.

Happy hols to those who are getting away. Gerrie yes getting fit will help. Also Hilts husband had Inspirator training Device - we asked but the hospital said they didn't offer it unless you had lung problems. In hindsight would it have helped my husband - don't know but maybe worth investigating? 

Keeping the faith 

Milly

PS Had a nice distraction today as our eldest son and his girlfriend have moved into a new home - so busy helping them. My husband came later and it was very emotional as he nearly wasn't here - but he is and is getting stronger little by little. Touch wood etc etc!
 

Hi Milly,  good to hear from you.  My Dad has had a really rough few weeks - constantly feeling/being sick, no appetite,  no exercise,  sleeping most of the day, extreme hot/cold spells, loosing lots more weight...

The oncologist last week said he thinks the side effects are down to my Dad having his second maderna covid jab and this conflicting with my Dads second round of chemotherapy which now includes targeted therapy. 

The oncologist did say he expected these severe side effects to start wearing off this week and they have - the last few days my Dad has stopped being sick,  started eating again and even went for his first walk today in more than a month (he always use to walk every day).

Si I guess we just need to take each day as it comes and hopefully he'll keep improving little by little. 

I'll keep my fingers crossed for the ct scan tomorrow...good luck. 

Lee

Hi Lee,

I'm pleased to hear that your dad feels a bit better and is able to eat. Strange this COVID vaccine how some people are affected more than others without the complications of chemo etc. Hoping he continues to improve and nutrition and fresh air can't be underestimated.

Thanks for your good wishes.

Keeping the faith

Milly

Hi y'all

Millie- I knew it.  What a lovely lovely distraction. It really is quite emotional when you've been through all the 'merde' and then slowly but surely little chinks of sparkle start coming back into up your life.

i have had so many 'little sparkles' on the recovery road. Father's Day was one, along with the holiday.It is my husbands birthday next week, he'll be 57, but I have a strong urge to get him a 1st birthday card, as one yr one from diagnosis, but maybe not,  not sure.

Lee- you are having some 'little sparkles' too. Your Dad is improving (:.

intersting thing about the Covid jab- I go with the Dr theory. Giving a jab that is supposed to generate an immune response, to a person immunosuppressed by chemo is absolutely bound to have an effect. It is one of those cost/ benefit conundrums. Get the jab or get Covid !!! For your average 18 yr old, who don't get sick fine, but in someone immunosuppressed the jab will make you feel utter sheeeite, but getting Covid would be a whole lot worse. The effects of the jab will pass.

I am staring to think these sites, (this one in particular ) are 'addictive', even when I haven't got anything to report , I look to see how everyone else is getting along and can't help blathering on ! and when people don't post for a bit, I start worrying how/ where they are......

Jaeof Kent and BFG- I have just worked out how big you 2 actually are!!!. I am not a metric girl, I cannot visualise 2.02M!!! Convert to proper measures that is 6ft 7 ins OMG. That is 20 inch taller than me!!. My husband is 6 1, we make a good team as he can reach top shelves and I can get down into little space at floor level LOL.

Keeping it up and keeping the faith

HILTS

Hi Hilts and all,

I agree - this site is addictive and I too get concerned if I've not seen a post from a fellow warrior! I was pleased when you posted Ray as, after all, we've all hijacked your diagnosis chat!

My question for today is:

Any tips on the sickness feeling after eating? Overall as I've said my husband is doing well eating a smaller but normal diet. However he can feel nauseous afterwards. He has anti sickness meds which do work. We've tried swopping from normal tea with milk to lemon and ginger tea after breakfast. Any tips?

By the way I've read green tea is good for the lungs so he's giving that a go too!

Keeping the faith 

Milly