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osophagus cancer diagnosis

1 Nov 2020 15:24

Hi,

I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.

osophagus cancer diagnosis

2 Nov 2020 21:37 in response to RayB

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.

osophagus cancer diagnosis

3 Nov 2020 13:16 in response to dooggreg

Hi RayB and doogreg, 

good to link up with you both.

doogreg, got your response on my other thread- I'm no tech gal, so sometimes get hopelessly lost among the posts.
Anyway, Doogreg, your info is incredibly useful and positive. Most of the general net is a horror story, so it is really good to have the perspective of a real post op patient.


we had our op date today, brought forward a week to the 10th December. Much better than the 17th!!. We have young kids for whom Xmas is still all sparkles n magic, so to have him in hospital over Xmas would really have been a nightmare ( not that this whole thing is any fun).

i am with you on the praise for NHs- omg, they have been so quick n slick over this whole thing. 
rayb- husband was only diagnosed on 29 th July- totally unexpected, his only symptoms was occasionally food clogging- but his loving nagging wife (me) forced him to the gp and the rest has been an utter rollercoaster. Appointments coming out of our ears in the first couple of weeks, so much and too much info, but that settled and he was on chemo within 5 weeks from diagnosis.

He's just completed the 4 pre op FLOT- nuclear stuff, but bravely borne. Symptoms gone after 2 cycles.

Now op on 10 th. I've told him it is chicken fortisip for his Xmas dinner while we eat the turkey , something for him to work towards after his op

Doogreg- did you have to post op FLOT?

rayb- keep in touch.

both- the emotional side of things is another beast all by itselfwow. My best 'treatment' for that was and is keeping things as normal as possible.. we are even back to squabbling whose turn it is to take the bins out

best wishes.

osophagus cancer diagnosis

3 Nov 2020 13:24 in response to Hilts

Ps- sorry I am a bit of a chatterbox.......

IS it just me or is this cancer on the rise??. When he was going for chemo over at the unit- there was 3 blokes, him being one, he being the oldest at 56!!!, the others 47 & 44. All blokes, all with varying stage 2/3 oesophageal. All with hardly any symptoms. Generally fit and well blokes.

it might be that the unit do all their oesophageals on a Friday, but including you guys that is 5 of you all in similar situations in a short period of time- interesting I thought.

osophagus cancer diagnosis

3 Nov 2020 15:03 in response to Hilts

hi again

good to hear from you i found drinking asda milk shakes a good substitute for solids by the time your husband gets home he will have had some solid food although its a bit trial and error over quantities the first couple of weeks and this is the period where you experience most of the weight loss , don,t worry if he is sick or has a lack of appetite this is all part of the healing process as i said milk shakes or just milk will get you through , you may also have a feeding pump connected which i did not enjoy using but that bis only for about 8-10 weeks , on the subject post op FLOT it optional for me  as i had such good surgical and pathology results  , the reason i declined was i had lost 18kg although i was a bit overweight pre op  , my chemo buddy has had the follow on FLOT he is now 70kg and i am 73kg i was 91kg when i started FLOT and he was about the same so don,t be overly concerned about weight loss if you , keep positive , ask questions , be informed you both will be fine , any questions you have i am always here to help and god bless.

osophagus cancer diagnosis

3 Nov 2020 18:17 in response to dooggreg

Nice one doogreg, 

urg - the thought of those overnight feeds):, with that revolting 'vanilla' flavour feed that repeats on you - ex nurse memories. You'd think with all the advances in medicine, they could have made it into something more appetising  like mojito or ipa flavour

So far, he has kept all 95 kgs of his weight, he is 6 4 tall.  So a bit of spread around the middle. When he was clogging with food, to get it passed what turned out to be a   tumour ,he was guzzling everything with large amounts of olive oil, cheese melted in everything and get this little invention of ours -Frozen lollies of Rhoda's cream - you know, the stuff that is like butter. He also is and always has ,guzzled milk.

Aldi is out closest supermarket, so they do milkshakes, belive it or not we don't have a local Asda.

we have just been out for tea and he worked his way through a huge suet game pudding , followed by a huge bit of bread n butter pudding covered in Rhoda's, makes me feel sick just thinking about it.. Before the 2nd chemo there would have been no way he'd get that down, he is very pleased with himself and since finishing the chemo he says it is the best bit of food he has managed to taste in months
Anyway , off now for a simple cup of good old tea.

osophagus cancer diagnosis

3 Nov 2020 18:27 in response to RayB

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

osophagus cancer diagnosis

3 Nov 2020 20:59 in response to Cancerstolemymum

Hi,

Thank you all very much for replying to my first post ,this has been a whirlwind for me and the wife with appointments galore and we have teenagers so in a bit of a similar situation , I have had my Hickman line inserted today ,and seems a strange thing to say but can`t wait for the chemo to start, probably will regret saying that lol, how did you mange keeping the line dry during bathing ?

 

osophagus cancer diagnosis

3 Nov 2020 21:55 in response to RayB

Greetings Ray B.

welcome to the oesophageal club, no doubt one you'd rather not be in .

What is your staging?

in answer to you question about keeping the line dry. Husband has a PICC. If I remember rightly a Hickman is up near the collar bone. My solution for his PICC was a black bin bag or carrier bag stuck on with gaffer tape!!! Most attractive.(:. I suppose if it is on you're collar bone, just a bit of plastic of any description stuck over it. Your hospital may have some special gadget though.

yep, we couldn't wait to crack on. Now, just finished the first FLOT x4. Nuclear stuff, but honestly after the 2 nd one was eating normally again. Amazing really. 
His pretty much followed a pattern- bit sick feeling on the day, and the day after, but once the steroids were stopped on day 3, felt like he said like the worst hangover in history- what worked for him was just sleeping it off, by day 7, back to normal-ish. He also described it as Groundhog Day!!
surgery booked for 10th December- so fast we haven't had time to dwell on it.

best wishes

osophagus cancer diagnosis

4 Nov 2020 15:17 in response to Cancerstolemymum

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.

osophagus cancer diagnosis

4 Nov 2020 15:19 in response to Cancerstolemymum

thank you and god bless you and your family

 

osophagus cancer diagnosis

4 Nov 2020 15:29 in response to RayB

Hi Ray

your nurse should be able to sort you out a large see through stick on dressing i used them on my feed tube and showered no problem , you will be fine on the FLOT although on the treatment days you will be hungry due to the steroids a good tip is to take a stock of sugar free sweets with you and milk shakes , good luck and be patient.

 

osophagus cancer diagnosis

4 Nov 2020 16:40 in response to Cancerstolemymum

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

osophagus cancer diagnosis

4 Nov 2020 19:59 in response to sisterp

Oh that is such an awful state of affairs.

mind you , it could have panned out much worse for us.

Husband went to GP in the March with minor swallow probs and reflux , was put on omeprazole. After a month no improvement whatsoever. It was me that had to be the pain in forcing him to go back- lots of , how do I put this politely- persuasion- he would have been quite happy swilling the gaviscon. I think it was because of my ex nursing background, that something just didn't sit right.At that point the GP referred straight for an endoscopy and the rest as they say is history, and boy oh boy fast as lightning once the endoscopy came up as dodgy, 5 weeks until chemo started.

i suppose I am quite the pain in the ar*e , but this time I am so glad I was.

take care.

 

osophagus cancer diagnosis

4 Nov 2020 20:20 in response to dooggreg

Thank you for your message. I already typed out a reply but it doesn't seem to have saved!!! My reason for replying was my mum was offered further flot after surgery this never materialised. There were no further scans or anything in the follow up. Push for checks.. whatever you can get..... when my mum had surgery part of the cancer got away and went somewhere they could do nothing about. Get everything you can and dont settle for anything less than you deserve. If scans and flot had been done after my mum.might still be here. Sending so much love..xxxxx

osophagus cancer diagnosis

4 Nov 2020 20:21 in response to sisterp

So sorry for your loss. Absolutely hideous disease. Xxx

osophagus cancer diagnosis

4 Nov 2020 20:48 in response to Cancerstolemymum

Hi .

i did not receive post op FlOT as my tumour was downgraded to a T1 after the pathology and the initial chemo had destroyed the tumour and it was contained in an area less than 3cm i was however given the option but having lost 18kg and the excellent results  posts op  it was agreed it was not really beneficial , i cant fault my treatment and everyone is different , its all about what stage you are diagnosed at , i see my oncologist every month and i am in a very good place now , a bit early to say i am cured but all the feedback says yes , you take care of you and your family and god bless you all.

 

osophagus cancer diagnosis

4 Nov 2020 21:18 in response to dooggreg

Best thoughts to those who are bereaved. What can one say. No words can be said that would make it any less painful.

it seems to me that with this cancer there is a very very fine line between curative and palliative. More so than with any others ( I may well be wrong here) and it doesn't take a lot for it to tip over into palliative. In saying that though there is a very brave and stoic chap on here who is 7 years + into a stage 4 diagnosis.

 That was one of the first questions I asked the team. Told them- no flannel please, tells us what we are dealing with- and they did.

doogreg- yours was an amazing response- down a whole stage from FLOT and that is incredibly positive.

i am told, now it maybe urban legend, that only about 40% complete FLOT because it is so aggressive?

i have to say 'cancer took my mum' we are not having the same experience with the hospital. Yours sounds awful, with lots of gaps in the treatment. How on earth can they not follow up on such a major operation- what were your mam's staging etc pre op. How much were you told. We have been told quite clearly, that the plan is curative BUT there are absolutely no guarantees. The nurse said " it only takes ONE rouge cell to upset the apple cart.

so while we are optimistic, I think we are also reluctantly of course realistic.

osophagus cancer diagnosis

5 Nov 2020 11:41 in response to Hilts

Hi Hilts

 thanks for your comments as i said previously its all about the early diagnosis and the diagnosed staging as to the chances of containment , unfortunately i have met to many people who were already in  a metastasis situation which puts the risk of the cells spreading elsewhere much greater , my heart goes out to them as that is a different thing to deal with , only surgery and pathology can reveal the true situation , from what you have told me so far sounds positive if i can help you in any way with advice on anything connected with your husbands treatment please message me , take care and stay strong both of you.

osophagus cancer diagnosis

5 Nov 2020 18:13 in response to dooggreg

Hi Everyone,

 

This is horrible thing to have, my staging is stage T3 N2 hopefully the FLOT treatment will have the desired effect, to give me a chance to have an operation and followed by more FLOT,

 All you can do is keep positive, keep as fit as possible eat as much as possible (obviously heathy lol) and hope for the best.

osophagus cancer diagnosis

5 Nov 2020 18:56 in response to RayB

Hi Ray

Thats good   tumour less than 3cm no metastasis and only 2 lymph nodes i am sure you will get through the chemo and onto the operation no problem fingers crossed , keep in touch during your chemo and let us know how it is going , remember don,t be afraid to ask about anything you are concerned about , take care.

osophagus cancer diagnosis

5 Nov 2020 19:29 in response to dooggreg

Hi Dooggreg

Thank you for your support, yes I will update this thread, and keep you up to date with my journey through this process.

osophagus cancer diagnosis

19 Dec 2020 14:54 in response to RayB

Hi folks, 

How are our oesophageals doing out there.

posting my  update.

Husband finished his FLOT chemo toward mid November, with a 'partial response' whatever that is ‍♀️.

Had his Oesophagectomy on Wednesday 16th. All keyhole. 8 hours on the table.

Now he is  on day 3 of something called an 'enhanced recovery programme' when I turned up about 3 hours ago, he was sat in the chair, drinking coffee!!!!!. So was the guy next to him!

Drains and drips in place, but he is walking around the ward!!
I was shocked, in a pleasant way, by how quickly they push the recovery- they expect to Chuck them out on day 7. He is exhausted, but asking for a paper etc.

Don't know the pathology stuff yet, but really not as bad as I was expecting

How are you all out there ?

 

osophagus cancer diagnosis

19 Dec 2020 15:59 in response to RayB

Just saying hello and that I hope your treatment goes well (I am sorry I dont know what FLOT is) my husband has oesophageal stage IV, T3/4, N1, M1 (lung) he cannot be operated on, and is on EOX week one, doing ok so far. I have spent all week in tears as I am so scared by it all but he is being really brave so I need to man up for his sake! There is so much support and information here, it really helps. 

I want to wish you a happy and healthy Christmas and a better new year. Sending positive vibes for all of you x

 

osophagus cancer diagnosis

19 Dec 2020 18:33 in response to Daisy71

Howdee.

welcome to the oesophageal club- no doubt one you'd rather not be in (:

How did your man present, how long was the trouble, how old is he.

if you read back through mine ,the ********* began on 29 th July, officially given 8th august. I think I have experienced every emotion under the sun, sometimes all in the same day.

tThis board is good, where you can spill in 'private'

FLOT- that left me scratching my head, but found out that it is 4 chemo drugs given at each sesh. Every 4 weeks. Nuclear stuff I am told, it has a taxane and platinum.

We are now through the first lot of chemo, and now the surgery, maybe there will be more chemo. They are going for curative intent, but we are under no illusions how 'clever' cancer cells are):

Dont know other regimes, there are loads of them.

There are a few stage 4 people on here, hopefully they might find our little thread.

It seems there are a lot of us 'oesophageals' about, the guy my husband went through chemo with, is now in the next bed to him, he is only 44! Mine is 56!!

maybe it is because I am mega tuned into everything oesophageal, but it seems to be very much on the increase.

best wishes

 

osophagus cancer diagnosis

19 Dec 2020 20:31 in response to Hilts

Thanks. He had hiccups when eating in September, endoscopy mid October, diagnosed mid November. He is 63, we have been married 23 years and have two boys aged 17 and 22. Its surreal. 
 

wishing your husband all the best for his surgery

osophagus cancer diagnosis

21 Dec 2020 13:23 in response to Hilts

Hi Hilts

it,s good to hear your husband has had his operation , i am now six months post operative and 90%

recovered , the pathology does take around four  weeks which usually coincides with your first follow up, if yo have any other questions feel free to ask , i am always happy to help, otherwise have a merry christmas 

Regards

Douglas

osophagus cancer diagnosis

22 Dec 2020 21:18 in response to dooggreg

Hi , 

thanx for coming back.

yep, he's all done and dusted. I could not belive how slick the whole affair has been. When I worked on the wards (okay, it was 1989!,), the op was horrendous and recovery pretty gruesome and lengthy. Not like the 'modern' job in any way. He is day 6 today and all he has left is the chest drain , or the bucket as most of the chaps in his ward call it. He is eating purée now and we have had the pep talk from dietician. All the pain stuff has gone too and he is on oral (jet) meds. All the  4 'wounds' are tiny no more than say an inch, and glued not stitched. Honestly it looks exactly like my gall bladder op. Impressive stuff.

He is utterly exhausted- hospitals are noisy and as I tell him , his body has taken an enormous nuclear hit.

Really hoping to have him home for Xmas, so he can enjoy purée turkey, with a side of pigs in blankets.....purée. He can then have a wonderful nightcap of Jej feed (:

i wonder is there any way to get all the Oesophageals on a single board, I see lots of random single posts on here and thought it might be useful if we are all together. I suppose the downside of that would be if people were in a bad way, listening to positive banter would be really off, and vice versa, if you are in a good place, sad stories would not what one would want to hear..... just a thought.

Have you had much/any of that Dumping syndrome? He is flapping about that , I keep telling him trial , error and maybe never, and he will only know how to avoid it from getting used to his new guts,but just wondering how common it is?

 

osophagus cancer diagnosis

23 Dec 2020 07:23 in response to Hilts

hi again Hilts

in response the first 3 months at home can be a trying with with the appetite , hungry , not hungry , the feeding supplements help a bit although the bind of being hooked up to the pump is irritating and a good incentive to get your eating in check, yes the "dumping" due to over eating is a problem but you soon learn no matter how delicious the food is you need to limit the amount you eat at one sitting , after 6 months i have more or less got this under control , i have a cooked breakfast every day , soup or sandwich for lunch and main course at 4 or 5 pm  snacks inbetween and toast at suppertime , and that is maintaining my energy levels and weight , the biggest surprise is probably how you can adjust to eating probably half what i did previously , eating is not a race or a competition so eat slowly ! , and rest rest , rest , their has been some serious internal re plumbing done and it needs time to heal ! , as before any questions you have i am here to help where i can, have a good christmas

Regards 

Douglas

osophagus cancer diagnosis

23 Dec 2020 07:55 in response to Hilts

Really glad his surgery went well, and wishing you a good Christmas x

osophagus cancer diagnosis

26 Dec 2020 15:08 in response to dooggreg

Hi, 

update from the front line!
 

i have posted this in another board, I haven't worked out to post to multiple boards, or get us all on one, but I'll write this again.......

yipee- He came home , day 8, 6pm xmas eve yippeee- sorry , I am enjoying being a tad childish. A small positive moment in the rollercoaster that has been , well, coasting since August.

i made a full dinner yesterday.  I puréed the lot for him, swimming in gravy, ate the lot.No Dumping, but his guts are still probably still thinking WTF. Today, it is turkey curry......purée.

covid has made it all a tad easier for us, no expectations to meet family or friends, to go anywhere or do anything- so just us, front door closed, doing what WE want to do. Which for once is absolutely great.

onwards we go.....

osophagus cancer diagnosis

29 Dec 2020 20:53 in response to Hilts

More updates-:

Got a call from the hospital today with the final pathological staging.

T1b from a pre chemo clinical stage of t2. No lymph or mets. Good clear margins. Got the lot.

As you can imaging , we are ECSTATIC - if you ever can be with cancer ! It is amazing how happy , good 'bad' news can make you. Who would have thought a year ago that I would be jumping up and down over  the size of a tumour!!!! But this is the best news in this 5 month rollercoaster.

Post op chemo -: he doesn't NEED it now, but hospital have offered so is going to have it. 4 FLOTS. Even if he only completes 2, it will be good. Then a final PET scan.

Doing well with his food. Still purée and overnight feeds, but hey who cares. Even had a Brandy earlier.

osophagus cancer diagnosis

30 Dec 2020 16:43 in response to Hilts

hi Hilts

thats very good news i am so pleased for you both and your family , remember healing takes time but with patience you will see improvements over the coming months , there will  always be a few "bad days " which the body decides to chuck in to remind you who is in charge , the additional flot was the same situation with me and was described as a belt and braces option which i declined due to weight loss , anyway good times ahead and a happy year to you .

regards 

Douglas

osophagus cancer diagnosis

30 Dec 2020 16:47 in response to RayB

hi RayB

just thought i would ask how you are getting on

regards

Douglas

osophagus cancer diagnosis

30 Dec 2020 18:08 in response to dooggreg

Yes, Ray- where are you?
thanx Douglas. Yep for sure there will be times when things are pants, but hey ho. Such is life I guess.

Husband has been quite lucky with his weight. He has not lost any throughout this affair, even gained 6lbs during the time when chemo improved his swallow and surgery. 
When the dieticians told us to eat a higher fat and protein diet  post op, they were quite surprised that we eat things like jersey milk, full fat everything, no low sugar rubbish, things like ox tail and belly pork all the time. Never gone in for the  5 a day , salads in winter, type of diet. 
'Old fashioned' , proper food any day of the week. The strange thing is that eating that sort of stuff, in normal times both our weighs are pretty stable, with BMI totally normal - whatever that is.....

osophagus cancer diagnosis

15 Jan 2021 13:15 in response to Hilts

Hi,

Well have made it through the 4 rounds of FLOT and yes it is nuclear stuff! Round 2 was delayed by a week because of slight infection in my hickman line. It certainly had it moments during the rounds initially i thought i was going to be laid up and stuck in bed, as it happens the treatments/rounds go, The day prior to the FLOT you are put on steroids  finishing the day after treatment , I personally hit the brick wall 2 days after the steroids having no energy for a couple of days and then a steady climb back up for a few days then really back to normal. I also was anticipating being sick all the time in my experience I had a couple of occasions of feeling sick in the rounds but was prescribed medication just in case. My last treatment finished on New Years Eve, I have had a CT scan and the news from the hospital is that the tumour has shrank so they have deicided to proceed with surgey. I am to be admitted 16th Feb (my 53rd Birthday!!) A pre assesment appointment next friday including some bike test I believe to check my level of fitness? Meet the anaesthetist. With the help and support from my wife, family and friends and lots of positive messages im through it and ready for the next hurdle. Sorry for not keeping in touch, but will try and update after the next appointment. stay strong, keep safe but most of all keep positive....it does help.

 

Ray

 

osophagus cancer diagnosis

15 Jan 2021 14:46 in response to RayB

Fantastic news and well done for getting through your treatment so bravely. Its not easy, my husband is only on round two of eight EOX chemo, and is completely wiped out, has hardly made it off the sofa for a week and half. Wishing you lots of luck for your surgery, and recovery afterwards! You have got this. 

osophagus cancer diagnosis

15 Jan 2021 15:34 in response to Daisy71

Hi Daisy

Thank you! I was kept going will regular snacks, fruit smoothies, banana milk shake still my favourite and even an odd glass of lucazade, anything to give me a boost when i felt at my worst, kjeep strong both of you and stay positive it has certainly helped me.

osophagus cancer diagnosis

15 Jan 2021 18:15 in response to RayB

Yay, Ray- good to have you back.

great news that the FLOT has done its stuff. It really seems to be the proverbial dogs b****s

you read exactly like my husband. He felt it was like Groundhog Day. Every fortnight Thursday night start the steroids, get nuke'd on the Friday, stop steroids on the Sunday, blotto for 3-4 days then better every day until time to go again.

He had all that pre op fitness workup. Lung capacity expanding stuff, bike ride 'stress' test, nose clip etc.

Mine is now post op. Had the whole thing done by keyhole!! OMG is that genius of a surgeon, my new best friend. He was only in for 7 days!!! 4 bullet holes, that is it!!!They chucked him out xmas eve, best present ever. He is now adjusting to eating smaller meals haha haha, not liking that one bit. Interesting though , in the 4 bedder with him were 4 guys similar ages all had the same diagnosis, surgery etc etc. What is going on with Oesophageal cancer, it seems 'catching' He still has his jejunostomy feeding tube in, but stopped them overnight last weekend.

We recently had the pathological final staging. Gone down from a 2 to a 1b, clear margins with no lymph's. Surgeon said there was very little cancer left, mostly scar tissue. So we are now waiting to hear on whether he needs the post op chemo- we are expecting it -in for a penny and all.

The whole thing seems a bit 'surreal' we are almost there in terms of treatment, but the emotional impact will take a lot longer to work through.

 

 

osophagus cancer diagnosis

15 Jan 2021 18:36 in response to Hilts

Hilts, So pleased to hear your husband is doing so well post op! Fantastic news about his grading, and you sound so upbeat its lovely x

osophagus cancer diagnosis

15 Jan 2021 18:59 in response to Daisy71

Hi Daisy, 

yep, it is weird, I feel very upbeat about his treatment  and it has all gone so well BUT- there is always one (: I am waiting for bad news, I am also very intolerant of other things, life in general, you know stuff like getting stuck behind a tractor, annoying adverts, other people in general (: deliberately  emotive charity ads, and all that identity politics arrrgggg watching one of those ****** programmes on TV at the mo as the 'screech sirens blaring' to an 'emergency', which turns out to be a drunk on a bench, love in a public toilet ( perish the thought hahaha)or minor theivimg ,really a blue light emergency!!!!- I could of course switch it off, but hey ho. Moaning at it is far better.One thing that is really dragging me down at the mo, is my idiots of bosses, changing their mind every 5 mins. I am particularly angry at our hysterical media, they **** off the NHS day and night, claiming horror stories at ever turn, but our experience has been amazing, seeing none of what they are banging on about.

I guess it might be called 'displacement' , who knows. The psychological will be a lot more difficult to heal I suspect.

osophagus cancer diagnosis

24 Jan 2021 12:48 in response to Hilts

hi Hilts

hope everything is going ok , everything has gone quiet on this page 

kind regards

Douglas 

osophagus cancer diagnosis

25 Jan 2021 15:23 in response to dooggreg

Hi Doug, 

it has gone all quiet on here. I always think it means 3 things 1) we are all trucking along and are in reasonably good places. 2) We are mid treatment and crawling through a surreal twilight zone or 3) We all have popped off!!!- i have nightmares about 'chatting' on a thread only to find the person has checked out!!.

As an ex nurse I have always had a rather dark sense of humour, then this diagnosis, we'll if you can't laugh what can you do eh!
Anyhows, we are quiet, because we are good. Recovery continues, although he has a nasty 'rash' on his gut- not the wounds, I reckon it is an allergy to all the tape n stuff, annoying rather than problematic. He is walking much further now and is back driving

Food ' discovery' is going well. He is managing to hang on to weight, only lost 6lbs since August. He even managed ( I told him not to!) eat a pie!! - left off the mash, but plenty of gravy and ate the lot!!! I despair sometimes- he only got (this time) a slightly raised heart rate. He was very pleased.

Oncology appointment on Wednesday, to discuss if any further chemo needed. We are expecting it, despite the good pathology. In for penny and all that.

Will update then. 

osophagus cancer diagnosis

25 Jan 2021 15:33 in response to Hilts

hi Hilts

thats good to hear , anyway i am also doing great no more hospital visits until June you both take cars and keep in touch

Regards

Douglas

 

osophagus cancer diagnosis

25 Jan 2021 15:44 in response to RayB

hi RayB

i just seen your post , i was wondering what had happened to you , i am gladf you coped with the chemo  and are getting your surgery soon , as i mentioned before its nothing to worry about ,if i can cope with it anyone can , the whole hospital episode just whizzes bye and before you know yit you are back at home , anyhow take it easy and keep us updated during your recovery.

Regards

Douglas

 

osophagus cancer diagnosis

25 Jan 2021 17:13 in response to dooggreg

Hi Douglas

Nice to hear from you,I was at the hospital on friday gone and met the surgeon and team members my operation has been put back a week due to the COVID crisis.Yes taking it easy lol will stay in touch.

 

Regards

Ray

 

osophagus cancer diagnosis

25 Jan 2021 17:41 in response to RayB

Hi Rayb, good to hear you are ok. My husband is due to have his third EOX cycle next week (delayed a week due to unpleasant tummy side effects) his appetite came back slowly this week during the break, and he is managing to get some soft foods down, we actually had shepherds pie dinner together last  night woop woop! 

I love hearing everyones updates, this is a difficult time for everyone, more so for cancer sufferers and its good to talk, and be in it together. Take care everyone. 

osophagus cancer diagnosis

25 Jan 2021 18:02 in response to RayB

Hi RayB and Hilts

Just thought i would add a picture of me taken today 7 months post op as a positive piece of encouragement that things will return to normal over time rather than looking like you had escaped from somewhere , chin up everyone and keep posting.

regards

Douglas

 

osophagus cancer diagnosis

26 Jan 2021 14:25 in response to dooggreg

Good to see you looking well Douglas  

my husband has had a weeks break from his chemo meds, and is already feeling more energy, more appetite and this has inspired us that he will only feel so awful during treatment but that at the end he will hopefully recover well, as you are. 
 

 

osophagus cancer diagnosis

26 Jan 2021 14:44 in response to Daisy71

Hi Daisy 

thanks i just posted the photo to show that your hair does grow back and that the wrinkles sunken eyes and hollow cheeks do eventually start to fade , i know it can be quite a shock to friends and family the changes to your appearance during treatment and a wee bit distressing  as you wonder is this it for me , it did stop me going out in public for a few months but hey ho thats in the past and people recognise me easily now altough i still am 18kg lighter but all the better for it , anyhow if you need any support during your journey  just ask as i have told others i am happy to help, take care and god bless.

regards

Douglas