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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