Thanks Milly

Hi all.

Went for 2nd cycle of FLOT today. Disaster struck as they were a wee bit worried that I had lost 9 kilos since the first cycle 2 weeks ago. Personally, I was delighted as I  have been trying to lose weight for ages, but they did not seem to be equally pleased! It is something to do with being sick as a parrot and not getting enough sleep   apparently 3 or 4 hours a night is not good. Also, a bowl of porridge a day does not count as eating either. One plus is I get to see the consultant oncologist tomorrow at 1025hrs. Anyway, had a great time with all my new pals in the Oncology Suite .

Keeping the faith here in Lincoln.  God bless  

Snaggie 

Hi y'all.

Bit of difficulty logging in this morning. I forgot my password!!!!! That is a very good 'moving on sign' I reckon, must be about 10 days since last log on - anyways........

Big welcome to the club Snaggie- bet you thought you were the only one out there with this until.........

yep- we have all been living the dream for +/- 18 months now.

Husband diagnosed with EXACTLY the same staging as you in July 2020.

we have all referred to this as the rollercoaster, so here you are.

Weight loss and vomiting - yep, compulsory part of the ride. BUT, you must speak to your team. They can give you different anti sickness etc etc. also eat whatever you want whenever you want. You don't want to be turning into the invisible man LOL.  Those suplime t thingys are RANK, so find normal stuff and 'adapt' it. How bad was your swallow before the chemo started, my husbands was pretty bad, gagging and vomiting after everything,BUT after the second chemo he was very much back to being able to scoff anything- once the nausea had gone down a bit. My husbands weight loss came a bit before, but mostly after, it is going back on now though, I have no idea why that might be.........

As for us- well , husband just had his 2 nd scar tissue stretch- bingo coughing stopped - big clapping emoji's. What did he do to 'celebrate' ***, peas, chips, white sliced and 3 pints !!!! Arg , I had to have it as well though ( yuuuuuummmm). I have said to him, it might be a bit of a pain, but if that is all that we have to put up with maybe an annual stretch, then I will certainly take it, considering what we have been through and what might have been.

snaggie- we LOVE Lincolnshire, went on hols there last year after post op chemo and we Loved it a place called sutton on sea- Millie is also familiar with it. Mablethorpe was just how I like it - totally unspoiled and traditional- bit like my old Barry island stomping ground.

We are busy getting prepped for USA IN 6 weeks. It's gonna be expensive, but as we learnt you can't take it with you so may as well blow it,LOL

Good to hear from you Lee. Sorry stuff is not so good. Form my ex nurse days, kidney stones is about as close to childbirth that men get, no consolation though. Not much treatment apart from passing them. Your poor Dad. Do tell him and you remember , we are all cheering for you and like to hear from you.

Still windy here in central England city of Morse

off now to Marshall kids ( teens) and husband, will come back later when no one bothering me

keep keeping the faith folk

hilts xxx

Thanks Hilts, good to hear you're all doing well.

Lee

hi snaggie

your T2NOMO diagnosis is very good news , the bowl of porridge ! , well must try hatder , i lived on flavoured milk and sugar free sweets throughout my chemo and lost about the same but over 8 weeks not 2 , the real weight loss happens after the surgery so it's good to have a bit of reserve fat for the healing process , the rest you seem to have under control as for your new pals i had a couple of chemo buddies who i went through my treatment with which made it less boring and i still keep in touch with them , anyway take it easy and before you know it you will be sitting at home wondering what all the fuss was about.

Regards

Douglas

Hi meltra44,

I'm sure being devastated doesn't cover it as it must be such a shock for your son, you and your family. 
As I have learnt Palliative care isn't end of life. It is about controlling the cancer. There are folks on this link that know more about this than I do but there are patients who have lived with the disease or found the treatment has stopped it. The upper GI nurses are a great help and Macmillan nurses were a great help to me too. No one can tell you how to feel but talking to someone who has more understanding of your situation does help. Others on here have used Maggies who are attached to some hospitals. 

Also Cancer research have nurses too who will help you. We on here are not medical experts and all have different experiences of a similar diagnosis at various stages. Ask any questions and we all try and help.

keeping the faith for everyone 

Milly

Hi Hilts,

I'm pleased to hear that the latest 'stretch' has worked for the cough! Impressed with the 'diet' too!

Interesting re weight gain, my husband seems stuck no matter what but everything crossed the 'dumping' seems to be less frequent so hoping it lessens and eventually isn't a problem. He has cut out chocolate and will gradually introduce a bit at a time. He had half a chocolate orange quite a while ago with bad results lol! Beer definitely helps apparently!

Please keep posting even if it's less frequent as it's good to hear how your husband and you of course are doing.
 

keeping the faith

Milly
 

Hi milly,

yes you're right feel so helpless and it's still sinking in I think. The spread to his spine was so unexpected as no sign of it on the pet scan before chemo was started. The surgeon is baffled by it as surgery date was all set for the op on his oesophagus,  this is no longer an option so waiting to hear what the next step will be. Suggestion of maybe a clinical trial so will wait and see. So good to actually talk to someone who knows what I'm talking about

Hi all,

I feel I need to express our thoughts are with all the Ukrainian people and those who are fighting their own battle with cancer in this terrible situation. 
 

keeping the faith for everyone 

Milly