Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Hi Hilts, 

I get what you're saying/feeling. I guess when we are in the thick of it we are on 'auto pilot' but when we 'relax ' a bit after positive news, we then spill the emotions!

I think having the news of esophageal cancer is enough to break anyone- and there's no shame in that.

We find that keeping focused but also having 1/2 days in a week where we don't mention cancer at all,  really helps. 

I guess there's no right or wrong way to deal with this but a lesson my Dad has always taught me is 'only worry about things you can do something about ' 

Lee

Hi leechamps

yep, you are absolutely correct.

Auto pilot is defo the thing- I even went to work the whole time- it was distraction, but absolutely on a mission too. Now I am finding work far more stressful that i did during, even though the work etc is exactly the same.

We know ALL  reasons and rationals but the old brain just doesn't see it that way. The worst thing about it, is that we were 'lucky', job done (for now), so I should just be grateful and stop feeling sorry for myself, but hey that is the rational side of it.

It WILL wash through, I suppose we ( our brains) are processing the whole thing and we are in a 'quiet time' - it is probably the first time since treatment , and diagnosis really ,that we have had the time just to sit down and errrrrr think. 
I know we should just let in come and process, but I hate the glue feeling, but as we all know human emotions are pretty spectacular things..

I know deep down that I am okay, but (always one ) I just need to 'accept' that this is okay and will blow over.

i have already broken my own once a week log in rule, but hey we all reach out when in need.

Keeping the faith sort of (:

Hilts

Hi all,

I get what you are both saying. We have had too much time from them beginning of this. Our youngest son moved out Iast July 2020 and my supply work wasn't available due to COVID. Also going swimming and choir stopped but I'm hoping to get back after Kev's chemo finishes.
 

Hilts,  I think it's natural to feel unsure but Kev says the same as Lee's dad and it's very true but not always easy to do. You will pick yourself through this phase and having a young family will help. As I said in my previous post we've found the NHS clinical psychologist who specialises in cancer very helpful but I appreciate it's not for everyone. I also agree getting out does the world of good and now my boot is off I can drive again so yippee! 

Kev had his 3rd cycle on Friday so last one should be on 17th September fingers crossed. 

Keeping the faith for you all,

Milly
 

Hi Lee an everyone else

i just wanted to let you all know i fully understand the different emotional status of those of us on the "curative" path compared to that of those on  "paliative" care , there is a vast difference between the two but we should all continue to offer support to each other with any non clinical hints and tips which can help , i have recently struggled with anxiety being in a crowded social situation , i now am reluctant to go into anywhere with more than a dozen others in it , had some reflexology recently but the jury is still out on that one , is anyone getting B12 injections or any other supplements ? that we may not be getting through our reduced food intake , any advice would be welcome , lastly i hope those who haven't been posting for a while are doing ok Ray b in particular , anyway may your god bless you and yours and take care.

Regards

Douglas

Hi Douglas,  its getting bad when you're asking for advice- you've been our inspiration (or definitely mine).

Sorry but I cant help with the B12 injections. 

My Dad has been trying to take in any vitamin deficiency through smoothies- identifying anything he needs then adding this through specific fruits/veg.

We have (as a family) just been out for a few drinks after I finished work, and this really makes a positive difference- the social impact is really good. We spoke about different 'life' situations and this was definitely a positive. 

Good luck to everyone. 

Lee 

Hi Douglas and Hilts and Milly, Lee and everyone,

Douglas I think you would definitely need to take supplements.   You may find that deficiencies can contribute to general anxiety, as well as other conditions.  In Scotland during the winter it is recommended that we take vit D supplements.   Do you get blood tests to check your various levels?   As the GP should then be able to prescribe some vitamins in high dose tablets and you don't end up taking things you don't need.   You can get some nice tonic type stuff to drink as well to help your iron levels and it's easier to take than tablets?   Also you can get Vit C sweets from the supermarket.   My husband has been given a load of various vitamins from the doctor, and plans to start taking them when the chemo is over as at the moment he is struggling to eat and is still relying on the jej feed.   He is suffering with the after op chemo, still has one session to go in a week's time.   Interesting you tried the reflexology.  A lot depends on the therapist giving it I imagine.   Maybe takes a few sessions to relax into it?   I appreciate so much all the things you've written on this forum.   I also hope RayB is ok.

Hilts, I hope you are ok,  I look at this board a lot, and hope everyone is ok, it helps to know other people are out there knowing how I feel, and brave enough to write on here.   I love reading your posts.   Of course we are scared about this hateful cancer and will it come back creeps into our heads.   I try to tell myself, when I feel low, just wait a few days, something will come along take my mind off it.   Maybe something will make me laugh or smile, or find a good programme on tv, a poem, a book, a walk.   Some chocolate.  Some good news might be waiting around the corner.   You never know.

Milly, my husband is getting some new and interestingly nasty chemo side effects.   He now has oral thrush so eating is even more of a challenge.   I wonder if he will be up to the last round of chemo next week.   I hope Kev is managing to get through his chemo.

Take care,

Sally X

Hi Sally

i to am on the scot gov vit D and taking ,adcal , cod liver ,B12 and multi vitamins  but think i need more , i had the oral thrush also and got antibiotics to clear it up not corsodyl  unless you want yellow teeth , your right though i really need stronger supplements and  a blood test , thanks for that , remember  any advice  is always appreciated , you take care.

Regards

Douglas

hi Lee

Thank you , i think the extended period of isolation up until April is where my anxiety problem lies , i will get through it i am sure , i reckon on 2 years post operation ro recover to a near normal  lifestyle so i am not to bothered about minor obstacles along the way , i hope your Dad is managing his condition well and i am sure you are a great help supporting him , this  journey continues each and every day although sometimes the path ahead might not appear to be clear , you take care now

Regards

Douglas

Ah, bless you Doug..

You are probably like us and the old brain 'processing' the whole affair. I am well familiar with anxiety, having been born like it. I don't mean the 'worry' type anxiety ( although that goes with it, I mean the BIG life bothering one, where you become very good at 'avoiding the triggers', vis a vis, reducing quality of life.  Like us, you are reacting to the whole process, on top of that , the' project fear', that has been Covid

So, easy to see the why, but question is what to do? Nip it in the bud for sure, take it on, there are so many things out there, CBT, counselling, groups, take the lot (:. A friend of mine , looks 'normal' on the outside, actually has pretty bad OCD, even got to the point of her not eating for fear of 'contamination', she has had a huge amount of 'input', and has managed to sit in a caff and eat a cake & coffee.

You mentioned reflexology- I have never been a fan of 'alternative' therapies, their value for me has always been feeling good in that moment, not as a 'cure',  So enjoy them , do as much as you like, along with other stuff.

Again, same with the vits & supplements. I have never been convinced of the added value. The peer reviewed evidence for a lot of it is at best sketchy. A lot of people are making a lot of money off people's anxiety.There is quite a lot of good stuff on vit d though. Again, the point with supplements is that if  they do no harm and make you feel better, then go ahead. However when vulnerable, the placebo effect can be very powerful.

So, Doug, I am afraid to say, that like us, you are completely NORMAL in feeling the way you do. But , probably, like us, it might be normal, but it ain't nice (: I am probably going to ring around today and 'scope' what is available (:

Anyhows, time to catch the lovely September rays (

Keeping the faith

Hilts.

Hi All

Your comments and advice are so helpful - it's good to hear about 'coming out the other end'  -  post op and second chemo. 
 

I feel good at the moment - 4 weeks after my pre op chemo. Going today for a stress echocardiogram to see if my heart can take the operation, which is scheduled for 29th - fingers crossed.   It all seems never ending and although I have a fantastic network of friends and family, I live alone and spend far too much time 'thinking' - at least the sun is shining. 
 

So good to have the support on here. 
 

keep smiling

Andi xx

Hi All

Your comments and advice are so helpful - it's good to hear about 'coming out the other end'  -  post op and second chemo. 
 

I feel good at the moment - 4 weeks after my pre op chemo. Going today for a stress echocardiogram to see if my heart can take the operation, which is scheduled for 29th - fingers crossed.   It all seems never ending and although I have a fantastic network of friends and family, I live alone and spend far too much time 'thinking' - at least the sun is shining. 
 

So good to have the support on here. 
 

keep smiling

Andi xx

Hi Andi,  it's great to hear you are feeling upbeat, and good luck with the stress echo.   Glad to hear the sun is shining for you today!   It's a bit dreich up here in Scotland but still pretty and there were a load of seals up on the beach this morning when I went for a walk.   Husband is having a rest day today (he is post op on 3rd lot of chemo), so I am glad as usually he is pushing himself to do far too much.   
Take care, and hope to hear about your stress test.

SallyX

Glad to see you back Andi.

yep, it does feel never ending, but it does end. It takes about 9 months all in, but of course delays,along the way are pretty much par for the course, not because the nhs is a disaster zone, but things like infections, blood counts etc etc.

Nice one on completing the lovely FLOT.

Thinking..... yes, I can imagine. We are at that point now, I would call us the over- thinkers. It is like our actual problem has been dealt with , so we have some 'free brain space' that those 'types' of thoughts can't resist occupying. I would love to know how to just switch the darn thing off !

I too really miss the people who no longer post. There are several that have dropped out recently . I only hope it is because they don't need us anymore - in a good way.

we have decided to go and see what 'Maggie's' has to offer. Sure it can't make it go away, but what is that saying 'every little helps'.

Keeping the faith

Hilts
 

Hi,

Just to let you know what I still need you all and still read the chats.  :-)

There have been some great posts, interesting questions and Tabnabs I'm sorry to read about the change in direction - that really is, to keep the analogy going, where the rollercoaster almost makes it to the top and then heads off in a direction that hopefully will become clearer.

I'm now 6 months post op and 2 1/2 months post my last flot cycle.  Weight has stablised - still get the "odd" dumping episode, but hopefully these are getting further apart.

Hilts:  I did it!  4 pints of boondoggle! 

Milly:  Bootless and now a menace to us all on the road.  :-)  I bet that's a relief.

Coping mechanism: Cancer does not define me; I choose how to live. But that is me and is often easier said that done especially with covid.  But hey - my wife of nearly 11 months now has 35 years of remission from Hodgkins, had a carcenoma removed from her lung (lobectomy last July which involved 3 ga's in under 3 weeks), an adenocarcinoma SABR'd in February (in between my 1st FLOT and the OP) and due a procedure to remove a 3rd little *** next month (only a day job). When we had the results that a 4th lump was benign we didn't know what to do with the good news. Our request for his and hers CT scanning rooms also didn't happen (I mean if you can get his and hers massage rooms - I don't know what the problem is). It's our 1st year anniversary next month which is also exactly the same day that I was told the tumour was localised and subject to the other tests, I would be on the flot/op/flot path.  Little did I know back then that I would meet all you lot!

So,

still here, still keeping the faith, and looking forward to my "next" couple of beers.

bfg

That's good to hear bfg. Happy anniversary for next month.

Lee

You are definitely an inspiration - I'm due to have the 'op' on 29th Sept or 4th October - I think I dread the second round of FLOT more!! Hope to still keep drinking the wine post op!!  It's just so good to know there is some kind of 'normality' at the end. I still look like Charlie Drake (who remembers him?) - one of my granddaughters said I look more like a grandad than nanny . Hopefully will have hair again one day.

Looking forward to hearing all your stories 

Andi xx

bfg,  great to hear from you, your post made me smile!   Congratulations on the first wedding anniversary coming up!!!   And making that [@Hilts]‍ aspirational 4 pints (_) (_) (_) (_) Well done!!!
 

sallyX

Hi Andi

The 2nd round of FLOT for me was pretty much like the 1st, but with the side-effects notched up slightly and for slightly longer (as I explained to somebdy, your body is still going through a level of post-op recovery when you hit it with the 2nd round).  Nausea was increased - but after talking to the team, different medication was given and this worked.

It took me a while to get back to wine - for the simple but strange reason, that my taste buds were shot.  I'm relatively back to normal now - well normal for me.

As for hair - practically every dark hair disappeared leaving me with whispy grey bits, but 2 1/2 months after the final cycle it's now grown back dark (I did joke with somebody on the risk of goiing ginger post flot) and have ran out of excuses for not shaving regularly.  As for Charlie Drake - yes I remember him - and at 1 1/2 foot taller it's never been said that I look like him.  :-)

cheers

bfg

Well here I am back on the chemo ward, having FOLFIRI, got three months on this then another scan, my ever pessimistic consultant came to see me this morning and said there was no promises that this would work and may have to start thinking about end of life care! Deep joy. Have been pretty quiet recently as have been an emotional train wreck since I got the news.

Doug, as far as supplements go, check with your team, I know mine got a bit snarky with me taking various ones.

BFG, boondoggle one of my old man's favourites, but he's recently got into home brew, last time he did it  our old house was called The Peregrines, so we called it Peregrines Piddle, now we live at Honey Field cottage, not sure what to call it, lol

as for everyone else, thinking of you all and sending healing hugs out everywhere 

Tabnabs x

Hi all 

Wow BFG -4 pints - well done!  Congraulations!

Blimey Bfg you and your wife have had some serious **** to deal with! Your post made me smile as well and gives us hope too!

Congratulations too on your forthcoming  anniversary!

Hilts I hope you find Maggie's helpful  - I'm interested to see how you both find the help available.

Tabnabs I've just seen your post - I can imagine it's been very tough. Pessimism is not helpful. Optimistic realism is hard but you have been through a lot already and have defied the odds. You've seen your daughter get married and your son graduate which I would think at some points in your diagnosis and treatment didn't seem possible. Keep going and maybe ask for support from other sources if you feel it would help you and your family.

Keeping the faith  for everyone 

Milly

Ps Honey Hangover?!

Yay BFG, you are back x

My husband is going to be well peeved  about your fluid achievement.LOL.

He still has the pesky cough, he knows why, and knows what to do, ( smaller meals, more fluid), like he needs an excuse to drink more fluid!!! He said to me the other day. " well , drinking more fluid will defo make it better, but I can't possibly drink  loads of fluid in one go" I nearly choked on my tea. No problem drinking 4 PINTS in one go eh.  He was claiming that it was the beer that was making the cough better- I didn't have the heart to say, nope ANY 4 pints of fluid will do the job. LOL. I make him sound like a real boozer .

Nice one for you wife to be clear (:
Andi, the post op chemo is pretty much the same as the first, but a few more intense side effects, nothing that can't be managed though. I think the 'problem' is that by that time you've all had just about enough of all the treatment, it might 'only' be 8 weeks, but that is on the back of at least 7 months before that and 'fed up to the back teeth' is a pretty intense side effect. 
As for the hair folks, yep, mine finished chemo on 23 rd March, all started coming back grey and fluffy, but as with this whole affair, little by little it got longer and darker. 1st haircut very early June and since then all the black is back and curls, only then'distinguished' grey like before, so again, does all recover , eventually. The chemo pasty colour only went completely when he showed it some serious rays, I look at pictures from feb and now and he really is back to his usual,looking self.

Anyway all. Keep the faith

Hilts