Hi y'all, 

Jaeof Kent- you"ll be with us for a long while yet. Remember palliative does NOT mean check out soon- it means treating symptoms to keep the thing under control. I think you have probably already read on here that some palliative's have become 'non palliative' and disease free..... so, sorry you're stuck with us for a while yet.

what chemo regime you on? Sounds like EOX ??  Maybe as I remember cisplaitin is the one that is given overnight. Possibly the other maybe oxiplat. Either way you may  or may not feel like the proverbial (: BUT it will highly likely stop most of those gut symptoms. We all expect a full update. You will likely have a 'fetching ' central line either PICC or Hickman- we are all experts in the 'lived experience' (:

The drugs - oh god yes, thousands of them when on chemo, steroid, anti sickness, anti dah de dah. Think 'smarties'.

and yes- the 'Yul Brenner' look is all the rage and quite 'fetching' (: so if it does decide to fall out- you will be one trend' (:

As for a 'healthy diet' nahhh. No need for that. My view has become very pragmatic, you know we all try and 'follow' a so called healthy lifestyle and this sheeeite still happens, sooo it is the 'Keith Richards health promotion plan' for me. 

Anyhows, all plodding on ..

keep it up and keep the faith

Hilts

Hi Jae and everyone,

Thanks for your reply and I hope your Chemo is going to plan. I can only agree with you in enjoying yourself, planning trips etc. Also as Hilts said there are cases of palliative being long term and cases on here like Tabnabs where Chemo has worked very well.

Our update is Kev has had the surgery on his left pleural cavatiy. Another major op but a shorter stay in hospital as it was keyhole. More scars to add to the collection! Drains removed Saturday and Sunday. Home yesterday tea time. Yeh!
He has lost a bit more weight (nearly 2 stone in total) but not surprising after everything he's been through. However he is eating well so hoping he can start to gain some extra pounds. Everything crossed for a smoother journey now and he can start recovering from a mahusive op and 2 more major ops in 8 weeks! Oh and the sexy stockings are back - white this time lol. 

Drug list is long but hopefully this should reduce and his vasculitus has nearly gone now. Few red blotches on his knees. I can't believe it's almost 9 months since this all began. 

Keeping the faith

Milly

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