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 Tabnabs,

You have been through so much and it is horrible news especially when you had made the big decision to go ahead with the op. As Lee and Jae have said Oncologist will have a plan and I hope it helps to know we are right behind you and here to offer our support. 
 

Keeping the faith

Milly

Hi Jae,

It's totally understandable that you have had an emotional breakdown and your mum being able to be there for you is important to both of you. I just wondered if you have been offered any specific help for the psychological  side of  your cancer treatment? We have just accessed a clinical physiologist through the hospital. I have  had counselling in the past to deal with several close bereavements but we are finding it very helpful as it's more than just listening she understands the science and reasons behind your feelings. I know it's not for everyone but  I thought I'd mention it. 

keeping the faith for everyone 

Milly

Hi JaeinKent,

Its totally understandable- I think we all (patients and famil/carers) have experienced these emotional times. Having this group certainly helps as we are all on the 'same page'. In our experience,  an emotional day or two, often is an opportunity to go back to the drawing board and try to refocus on the situation and plan of action. 

We have found that fresh air, change of scenery or if possible a walk in a nice place, can help massively. 

Good luck

Lee

Morning y'all

wow - have we all be quiet recently.

i am really trying now to only log in once a week , as I was daily, sometime more.  I guess it is about trying to move on? Who knows (:

Tabnabs- what an awful disappointment, you had probably 'accepted' the original plan, then hopes raised for a complete stripping, then being literally stripped of that., although hopefully by being on this board  you"'ll be 'comforted'somewhat by the fact that there are a lot around with 'inoperable' doesn't mean 'hopeless' just means different- so you'll get nuked when the beast gets Bolshey-there is more than 1 way of slaughtering the beast. There are a few around on this bored and others that are 'inoperable' , nuked, then d'visable' disease free.

I guess I have been quiet this week too as the 'emotions' have come home to roost. We are both feeling quiet low and tearful. It is of course completely reasonable for the whole year to catch up with us. As we now have finished with ( for now) all the treatment our brains are probably a bit empty of thoughts, so the good ole brain finds stuff to fill the gaps.

Despite knowing full well the reality, it doesn't make it feel any better, we are obsessed with it coming back, now isn't that rather 'indulgent', but it is not helping to know the reality. We were thinking about counselling, but no amount of it will change the reality of what we have been through. We have deliberately kept busy making plans etc, but we are for now quiet on that front. Spending more time sitting down.......... thinking!

Jae of Kent- I totally get and understand your meltdown- they are good for the soul, I would actually love to have one to clear this brain of mine, but even that is not happening- as I tell people I feel like I am swimming through glue!
No doubt we will work it though somehow- as I always say " what choice do we have"

sort of keeping the faith (:

Hilts

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 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

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 Hilts

Hope you and yours are well , i am on the case today with the supplements and dietary advice and will report back on any good information i get , everything else is under control  , on another subject where is RayB ? , take it easy.

Regards

Douglas

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

Hi all,

I totally agree that there are very different anxieties between palliative and curative. Also everyones situation is different on both these paths. My husbands cancer and op became a second consideration when he nearly died from internal bleeding had an emergency op and was ventilated. Then the life threatening lung problems as you know resulting in a 3rd op. A total of 6 weeks in hospital (two in ICU) with very few visits . So a very different path to what we expected.We still don't know if his lung has fully inflated but he is currently concentrating on getting through the post op FLOT. 

Sally as Doug said antibiotics can be prescribed for thrush. My husband had thrust pre op and was automatically prescribed them this cycle and have worked for him. Also Diflam for mouth ulcers. He is finding the 'build up' of the chemo in his body is making him extremely fatigued and he has to eat small amounts throughout the day even though he doesn't always feel like it. Overall though he is maintaining his new weight which is two stone lighter than before the op. Thankfully he'd put on over a stone in prep for op which I know not everyone can manage to do. My husband has been advised to take Multi vitamins and has the ones with Iron in them. No one has mentioned Vitamin D or B12 but I'll mention it to Kev. We are in the garden at the moment but in the shade lol. Interesting re Scottish Government recommendations.

Anxiety over COVID is again personal and very different for everyone especially if you've lost someone close. It has added an extra problem in my opinion- having a diagnosis of any cancer is life changing and Oesophageal cancer is so life changing. During a pandemic it is harder and not being able to visit your loved ones in hospital is awful particularly when they become critically ill. 
However thank goodness for our NHS and the remarkable people who work to save lives.

This forum has been so helpful - we are all individuals caught up in a diagnosis no one wants to hear. 

We wouldn't be human if we didn't have hopes, dreams and fears. 
Doug you and Hilts husband have been an inspiration to me and many others. Your anxiety is totally understandable. On a positive you are going out and there are many people struggling going out at all after the isolation Covid has caused without the added cancer and treatment. So well done for trying complimentary therapy and recognising your difficulty. 

AndI I wish you well with your forthcoming fitness test. My husband worked hard at being fit before the op and it's worth it. Well done for completing the FLOT.

Lee so good to get out with your dad and thanks for the update.

I too have been concerned about RayB. I always look to see if he's posted especially as this is his link.

Take care all and 

Keeping the faith 

Milly

Hi Milly

nice to hear from someone with the same concerns i still am trying to get information on how to get the best from supplements which our modified digestive systems are maybe not getting through our reduced food intake , our government in Scotland sent us vitamin D tablets FOC by post last autumn if you had the flu jab , on another subject yes your right having a higher body weight definitely gave the body the  extra reserves which made the recovery from the surgery easier ,  keep posting , in the meantime best wishes and take care of you and yours 

Regards

Douglas

Hi Milly and Doug,   Thank you for the heads up about the oral thrush,   I guess he has been lucky to get this far with it just starting now...    He has been prescribed an anti-fungal for it - nystatin drops and has been taking them for a couple of days now.   Hopefully it will ease up soon, it seems to be in his (new) gullet which is most sore.

sally X

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