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

Hi all,

hope you all doing ok, best wishes for Kev, must feel like a pin cushion! Definitely agree with Hilts ethos on the rock n roll life style, I did the whole healthy (vile) smoothies and homeopathic remedies thing but actually all it did was make me miserable, so back to the little of what you fancy! 
my update is that I had my CPET today, managed to get through that ok then I had another scary talk with one of the consultants, they really know how to scare the bejesus out of you! 
micro ablation booked for the 19th and big op for end of August.

trying to keep the faith today, be ok tomorrow, stay strong everyone 

Hi Gerrie,

Well I've not counted the scars lol. Yes they certainly know how to scare you! After my husband consultation the next day  I spent 3 hours crying whilst I had my hair done! Bearing in mind the hairdressers had only just reopened again - so most people were very happy! Fortunately my hairdresser is a friend too and understood! 

As I've said before the actual Oesophagectomy couldn't have gone better and he is able  to eat well. What happened to him was very unusual and it was the second emergency op that has caused the onsuing problems.

One thing I haven't mentioned on this forum, as I was unsure whether to, is having an electric bed (no I'm not being rude lol). We had ordered a new bed in September before all this kicked off. It was from a local shop so after some investigation we decided to ask if we could change the order and he did. It was ordered and made in Rotherham and delivered in a week. It has been so helpful and we opted for two singles which work independently so great for a cuppa and reading my book too! Also you get the VAT off for medical reasons. If anyone does decide to look into this option be careful as some want to come to your house and won't quote a price until they are in your home.  Just a thought ...

You are on the path Gerrie and stick with it - they have to give you the worst case scenario. Lots on here have been through the process and no one case is the same. Many good outcomes including you after all you've gone through the last few years. You are an inspiration.

Keeping the faith 

Milly

Bless you Milly for your encouraging words, I know I'll pick myself up and dust myself down in a day or two. I was really lucky as I was able to have one of my daughters with me today, which was just as well, as I didn't take it all in! 
good advice re the bed, will have a look into that, although living on an Island does have its delivery issues! 
take care

Gerrie

Hi all,

It looks like it's been very quiet on here which I hope is a good thing. We are plodding on. Kev has been back home for nearly 2 weeks after his third urgent operation. It all seems unbelievable but hoping he can continue to recover. We saw the surgeon who performed the Oesophagectomy and he was pleased with him so far. He sees the thoracic surgeon from the other hospital next Tuesday. His breathing is much better so fingers crossed. His eating is still good - feels sick at times but is getting used to managing it better. He really needs to gain some weight back as he has lost 2 stone in the eight weeks since his first operation. Not sure about another round of FLOT / will see what they say. Staging is now T2 NO. We didn't get anymore detail Hilts like your Bletchley Park! 
RayB I know that you had complications and pneumonia which Kev has had just for good measure! You had second FLOT - so hoping Kev will be offered it. He is definitely more anxious about it because of how critically ill he's been. Hope those who are able can enjoy the sunny weather. 
 

Keeping the faith

Milly

Hi Milly, 

Good to hear Kev is doing well and that the surgeon is happy so far.

I know it has been quiet on here - as daft as it sounds I have been missing the e-mails popping up on my phone!

Quick update on my Dad- he is coming to the end of his 2nd round of chemotherapy and the swallowing is fine but he hasn't really felt like eating much due to the severe side effects of his covid vaccination (which the oncologist now says he shouldn't have really had whilst having chemotherapy). Just over a week ago my Dad starting wanting to wee every hour or so and experienced a burning sensation and also had lots of blood in the wee and said he could see little blood clots coming out. So off we went to the hospital and after blood/urine tests the doctor said it might be an infection although it's not showing or it might be some damage that the chemotherapy has done. The doc prescribed a course of antibiotics and yesterday and today my Dad is seeing/feeling an improvement.  I guess just another 'up & down ' on the rollercoaster journey!

Take care folks,

Lee

Hi y'all.

LOL - I was wondering why it was so quiet recently. I even went on to check in case I'd missed any notifications!!!! But didn't really have anything to say- well nothing useful anyway  (: It just goes to show how helpful we have been for each other and we miss people when it is all quiet.

Millie- glad to hear Kev is plodding onward and upwards. Every week, almost unnoticed the upward recovery trend continues until they are moving back to themselves. You staging sounds good too. N0 is an absolute cracking result. The post op chemo, er what can I say, some chose to have it some don't, mine did, but his body got well pee'd off with the platinum after the 2nd lot. There are lots of adjustments they can make to, like 2 lots instead of 4, half strength. It's all about what can be tolerated.

Lee- chemo is absolutely foul stuff- it murders dodgy cells very well, but certainly it impacts on healthy cells as well. My guy had the odd splash (sorry if tmi lol) of blood in wee and 'other'body fluids (: he got a fair amount of 'odd' bruising too. That why they check platelets( clotting) before every 'juicing'. My guy also had tiny little blisters in really odd places again very cross healthy cells. 

What have we been up to ? Well not a lot. Apart from, him buying a new car ! First off he was thinking about getting another estate. I off the cuff said , "no way ,this chick is wanting wheels with kerb appeal "LOL ,I am 52 not 22!!! so eke he came back with a jag sport and is picking it up on Saturday , I am laughing writing this as I can't believe he did it. As he said ,after the year we've had he fancied letting rip and then said " well, I can't stuff in my shroud"!!! and the tax man's not having it..........he really has started to get that " life is for enjoying vibe" yay

I think I've said he is back at work but he overdid this this last week with all the football upset & beer and his body has just reminded him of what it needs, and although he is 7 months post op, he is only 4 months post treatment completion.

He is still coughing, but under control. They are going to do a 'ballon dilation' of the anastomosis ( oh I spelt it right) basically tight scar  tissue at the join between what's left of his oesophagus and stomach TMI, this time he is most defo have sedation (: aparently very common- like 47% eke

Anyhows, for someone with not a lot to say, I've said, as usual quite a lot (:

take care y'all

keep it up and keep the faith

Hilts x

Great to hear from you guys - yes I've missed the 'chat' too. 

Lee : I'm pleased your dad is feeling a bit better. Yes COVID jab is a strange one - my husband had his before and inbetween chemo. Chemo is pretty brutal from what I've seen/read  but hopefully it's working if his swallowing has improved.

Hilts:: Kev was always going to have 2nd FLOT but because of the internal bleeding land him having pneumonia, pleural effusion and an operation to remove the pockets and expand his left lung he is a lot further back than he should have been. Hoping he can gain weight and build his strength. See what Oncologist says at the end of the month.

Your guy has done so well but it shows that even though he's made great progress it's not always 'plain sailing'. I hope his procedure goes well - from what I've read as you say it's common but fixable. Who knew we'd all become 'experts' in such matters!

Kev also feels more vulnerable with the Covid situation having  been so ill  and had such severe lung problems. Such a good job he had the thickening peeled back on his left lung or he wouldn't have got better. Our bodies are so complicated!

Keeping it up and keeping the faith!

Milly

Hilts,

I meant to say great that you're having a sports car! Why not? My husband bought an Audi TT a few years ago snd it's lovely! Yes 'shrouds don't have pockets'. I'll be glad when we can get back to booking trips, concerts and generally having fun. We should have had a European road trip in June 2020 but we will do it! So glad that we've always done 'what we can, while we can'. Life can throw curve balls which we just don't expect. Road trip? 
 

keeping the faith

Milly

Pleased to hear there are some small wins (Milly's husband on slight improvement, Lee's Dad's antibiotics working) and some big wins (Hilts new sports car!). :) 

I discovered, when I stopped taking some paracetamol for a small pain in my throat, that pains in my bones had crept in rather unnoticed and I was in a lot of pain at the end of last week. Got prescribed some co-codamol which has finally allowed me some sleep after two weeks of truly awful sleepless nights. I've never been happier to grab three hours sleep here and there! Not perfect and suspect I need stronger (and GP said I probably would too) but still... the relief is massive! Plus all my other symptoms (dodgy stomach, bloating, dry heaving) disappeared the moment I started taking the co-codamol which against suggests I was misreading my pain. 

Yesterday I started my first chemo! CX (Cisplatin and capecitabine). Spent 9 hours in a day clinic on various drips to get my cisplatin where I was praised highly (and way too loudly) for having wees. LOL. Felt like I was back at nursery school! And I've taken my first capecitabine tablet today so just waiting for my first "chemo symptom" to develop. Though the oncologist was very much "You won't even know you are on chemo" as we're going for the gentle symptom-easing approach, the cancer ward nurses were much more "This is very serious and you will not enjoy it". So we'll see how I go. 

Husband is currently freaking out about COVID (I'm now double-jabbed) and every other possible infection so I reckon I shall be spending the next few weeks wrapped in cotton wool. Not helped by my Mum (who takes a COVID test every day!) coming to visit pre-chemo and getting pinged on the isolation app whilst here. That didn't go down well with the husband... LOL. Fun times ahead. 

I hope everyone has a good week with only good news. 

Hi all, 

good to hear you're as well as you can, good stuff about the car Hilts, the thing is you've got to just crack on and do things, covid restrictions allowing! We managed a house move last November, and haven't looked back. Milly, a road trip sounds awesome, you'll have a blast.

Lee, good to hear that your Pa is doing better, chemo is so different for everyone, I kept reading horror stories and got totally paranoid that mine wasn't working because I didn't seem to suffer half so much with subsequent treatments ‍♀️
Got my liver ablation on Monday, just off for a covid test and then lockdown until then.

stay safe 

G

Hi all, 

good to hear you're as well as you can, good stuff about the car Hilts, the thing is you've got to just crack on and do things, covid restrictions allowing! We managed a house move last November, and haven't looked back. Milly, a road trip sounds awesome, you'll have a blast.

Lee, good to hear that your Pa is doing better, chemo is so different for everyone, I kept reading horror stories and got totally paranoid that mine wasn't working because I didn't seem to suffer half so much with subsequent treatments ‍♀️
Got my liver ablation on Monday, just off for a covid test and then lockdown until then.

stay safe 

G

Gosh,

Talk about waiting for a bus and a whole bunch turn up.

Hilts - I did the same.  No notifications, but checked the chat anyway.  :-)

As for all these sports cars - now don't get me wrong, I love the Audi TT, but I'd probably have to either buy a pair and use them as roller-skates or a convertible and play tank commander all day.

Glad to hear that everyone is moving in the right direction, albeit baby-steps.

I'm now 4 weeks post the 4th cycle of FLOT and GOING TO A RESTAURANT for the first time in 16 months.  We were in France on the last night of our weekend away on the 14th March 2020, when the restaurants were told they were closing at midnight - so about 4 hours warning.  Needless to say, they were not amused.  We managed to get back via the hypermarche the next day without incident before we went into full lockdown a week later.  (Remember the message?  Pubs and restaurants will remain open, but please don't use them! Then full lockdown commenced).

Milly - delighted to hear that hubby is making progress.  Just a case of building him back up to fighting weight - but I know what you mean about covid.  We were looking forward to the 18th July, but did not expect the increased covid rates and the complete removal of restrictions - it looks like a disaster is about to decend, and all we can do is sit back and watch.

Tabnabs, JaeinKent and Lee - great to see the progress being made. I know what you mean Tabnabs on the chemo - my first round went without too much incident - I turned into AGOG for a couple of days, but the 2nd round of FLOT was a bit like the first - but turned into AGOG for a bit longer (a grumpy old git), with a does of nausea thrown in.

Keeping the fffaith - I still haven't managed 4 pts yet Hilts!.

bfg

Hi y'all

LOL BFG- we are all coming on. D'ya know I think we really do care about what the others are up to. We have found a 'bond'. I try to 'visualise' us and come up with us all sat around a big table in the good old 'working men's club' or a bingo/ card  table / whist drive supping and chatting. Like the gents used to do back in my old home town. Been hauling steel/ coal/ iron all day, come home have tea then tell the wife " I 'm off to club" where they would all sit, and just be and enjoying the 'simple' now

Anyway.......

Jae of Kent- Pain is such a phenomenal condition. They even have 'complex pain clinics' around here! Stress is a major cause of pain. and you have had a fair bit of that lately! It is incredible how nerve pathways show themselves, pain occurring miles from where the problem is- coding is not 'only' good for pain LOL. Let's just say I have a 'complex ' back history and the only  thing that has ever remotely worked is a TENS machine, even better than opiates- which were pretty useless. I wonder if I was 'distracted' by the buzzing- who knows. 
I certainly feel your pain about fusspots! My world is full of them- they can't help but cluck and say the most reassuring (not) LOL. Things have really changed since my nursing days , people were told stuff, but not to the extent as now. I remember when my guy went for the op, the surgeons told him 10% chance of death!! To Which my husband responded " well ,all us humans run a 100% risk of death eventually "  yep tmi is defo on trend these days , but I'm not if it is beneficial or not ???
 

BFG- Have you though about a 'convertible' LoL. And wow going out, great, enjoy every mouthful -we want a full report.

Just told today my guy's ballon dilation is going to go ahead next Thursday now ! Once that is done I hope he doesn't challenge himself to increasing to more than 4 pints ! I will have to pick him up in the new car.........

Any hows, Friday afternoon and I supposed I should look interested in finishing my work !

keep it up and keep the faith

Hilts

hi everyone

not been on much but still suffering from an annoying tickly cough , anyone got any remedies ? apart from that i am tip top and whizzing around Scotland with the roof down and the rock music blaring ,  thats how my friends and people who know me know that i am on the mend , i am getting a course of reflexology ,aromatherapy and therapeutic massage from a charity free of charge to see if it will help with the physical side of recovery and i will report back on this , naturally i will be making a donation to their funds , stick in everyone you know that if i can then all of you can certainly do it  , take it easy.

Regards

Douglas

Hi all,

I'm glad I posted as good to hear everyone's update. I agree Hilts we have formed a bond and it's great because we all feel we can share our ups and downs and even have a laugh along the way! A sudden thought of The Banana splits and the Double Deckers came to mind about us all in this 'Gang' lol.
 

Doug so good to know you're having a great time in Scotland! Be good to hear about your treatments which sound much nicer than chemo! 

Jae so typical that your mum got 'pinged' at that moment. It's hard with Covid and like BFG said just got to sit tight. It's hard being a patients 'other half' but damage limitation is our take on it! 

We aren't able to do a lot at the moment anyway but are hoping to at least go to our local National Trust and just sit somewhere different. Early days for my husband as he's 10 weeks post first op, 9 weeks post second op and 2 weeks post third op! 

Hilts hope all goes well with 'the stretch'. 

Tabnabs hope all goes well on Monday. 

Bfg enjoy your restaurant outing! Yes update needed - maybe a glass of wine if 4 pints is too much.

Cheers! 
Keeping the faith

Milly

Hi Bfg and all,

Hope you had a good meal and enjoyed your evening.

I recall you saying that you had some breathlessness after your op? Not sure if others experienced this too?

As you know my husband had a complicated pleural effusion which required additional surgery. He is making progress but has noticed when either sitting on the loo or bending forward  his breathing changes to a more shallow breathing..  Any advice on whether this is typical of Oesophagectomy and if it improves? Thanks and hope everyone is trucking along. Hope your procedure was OK Tabnabs.

Keeping the faith

Milly
 

Hi Milly

Having gone through the journey - with the excepton of your hubby who decided the left tunnel looked far more interesting - I recognise the symptoms.

Post-the original-op we were encouraged to stand up and walk about as this was far better for the lungs than lying down (the worst) and sitting (not so bad but not as good as standing up).

I imagine that post the other ops, the lungs will still be recovering big time and the effect of sitting down, and leaning forward basically pushes all of the internal organs and internal fat upwards and restricts the lung function - hence the more shallow breathing. 

It will improve. You should have some breathng exercises to help work the lungs, and when ready if not already, then walking is ideal - with small incremental steps each day.

As for the food - what can I say.  The owners and the people working there are more like family - we do what we usually do and share starters and desserts, so a mix of fresh grilled sardines, dressed crab, moules, skate wing and fish and chips - finished off with tarte tatin and a chocolate bomb with pear and ginger and a bucket of chocolat sauce.  :-)

Keeping the fffaith

bfg

Just a quick update, got the ferry across to the mainland only to be told that the anaesthetist had been covid pinged and therefore op was cancelled Rescheduled for Wednesday now, in meantime I had a CT scan only to have an allergic reaction to the dye, looked like I'd gone ten rounds with Mike Tyson! Then had the most appalling coughing fit which lasted over 20 minutes. Then to add insult to injury the cannula site bled all over my only set of clothes! What a day , think I might stay in bed today just in case! 
Bfg your dinner sounds amazing, good for you.

trying very hard to keep the faith! 
 

Hi Bfg,

Thank you so much for your reply. Yes he was up and walking the ward after his first op, off oxygen and hitting the top of his spirometer before he became critically ill! After all that's happened the Oesophagectomy seems to have been in the background! Your explanation makes complete sense. He is doing the breathing and other exercises and yesterday hit the 4000 on the spirometer fior the first time since it all 'kicked off'. We have been on one short walk and once this heat (not complaining) has subsided we will go on a steady increase fingers crossed. 
 

Your meal sounds amazing - I don't suppose you are allowed to say where it was on here? So pleased for you. It must have been so special. Here's to more good times!

Keeping the faith. 
 

Milly and Kev says thanks too! 

Hi Milly - that's great.  I remember I could only walk around the house and got extremely breathless when first out of hospital - but 9 days later walked up and down the road, and then even walked from the car to meet my surgeon for the post-op 2 week checkup.  Small steps.

All I can say is that if you search for the name of the registry office in a place that you can append to the word paddling, then you will discover a tavern that is not really a tavern.

Tabnabs - I'm surprised the ferry didn't sink!  Was the allergic reation a one-off?  You could have waited until post-op at the end of August for this, then you would have been blooded, looked like you'd gone through 10 rounds with Tyson and had the scars to prove it!

bfg

Hi Tabnabs,

Not sure but are you on IOW? This pingdemic is causing havoc but so are the cases! Best not to dwell on it though. Sorry to hear about your trials and tribulations. Brings  a new meaning to 'I don't like Mondays!' Hope you have a better day today and all goes well tomorrow. Keep going and yes keep the faith!

still keeping the faith

Milly