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,

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.

Hi Snaggie,

Welcome and I'm glad the diagnosis was at a relatively early stage... that's good news.

Unfortunately your story is all too familiar and there is big room for improvement in the process of getting a patient from the first stage of visiting a GP (if that's possible) to actually having the endoscopy.

As this disease is getting more common and attracting younger people, it would be nice to see an endoscopy as part of a regular annual checkup for the over 40's/50's...I think it's only in one or two countries where this happens-Japan may be one of them if my memory serves me well.

We are based here in Spain and the process was similarly slow here at the initial stage (COVID also playing it's part).

As you would have seen on here, chemotherapy isn't nice but in lots of situations it has a certain amount of success.

Good luck with your journey.

Lee

Hi Snaggie,

Welcome - you are at the beginning of your pathway and sound very upbeat and positive which is good. I'm glad we have all helped you during the initial turmoil of diagnosis and staging. As you say the NHS staff are brilliant and it's good to hear that yiu have seen the surgeon. My husband didn't get an appointment until after he had finished the first FLOT. Everyone is treated as an individual and each case varies.  However the care is wonderful and the specialist nurses are such a support. 
You have clearly 'done your homework'  and read all 65 pages! So you will know we have had different stories and outcomes., Stick with it - my husband went through some unexpected twists and turn but is doing well - fingers crossed. He saw the oncologist for his 'check up' on 9th February (he was diagnosed end Oct 2020 and so far so good. We see them again in 3 months.

So keep drinking that water to flush out the toxins and please, if you feel able to, keep us informed. Any questions just ask - no medical expertise just experience. 

keeping the faith

Milly
 

Hi Lee and everyone,

I hope your dad is chugging along Lee and you are OK too.  I think of everyone on here and wonder how you are all doing. I definitely agree re endoscopy as a routine check up - like we have mammograms. My mum died aged 51 from Breast cancer so it's reassuring to be checked. 

Kev had his 'check up' on February 9th it was just a chat and a weight check (he can't seem to increase his weight) 
It seems so strange that there are no scans etc but I believe this is the standard practice. Anyhows he is doing well so far - fingers crossed.

Hopefully the weather in Spain is better than here at the moment! 

Keeping the faith for everyone 

Milly
 

Hi Milly,

We are having a rough time at the moment. I don't remember my last post but keeping it brief...Dad is constantly dry wrenching and eating only a very little food and water. He is in constant pain and last week we ended up in a&e and the scans showed he has kidney stones-ffs!

So they are not quite sure but the common belief is that the kidney stones are causing so much pain which is triggering the sickness (even though there's no food comming up only phlegm) but the cocktail of medication and the cancer is also playing it's part.

The oncologist has said that they want the stones to pass naturally but would look at layering them as last resort.

Dad is on chemotherapy again but today we had to cancel the appointment as he was awake all lady night in pain and trying to be sick.

I remember you mentioned your husband being a Derby supporter and working at Rolls Royce - we were from Derby/Nottingham and my Dad worked at Cauthalds (don't think that's the correct spelling!)

Lee

Hi Lee,

I'm so sorry to hear that your dad Is unwell and you are all having such a tough time. Hopefully if they can sort the kidney stones it will help him. It's very hard seeing your loved ones poorly. I'm sure your and your families support is a huge comfort too him. I really hope he can start to feel better. 
 

Yes my husband and indeed I worked at Rolls-Royce. I left in 1988 after our son was born. My husband took early retirement in 2015 thankfully. Although some people find work helps them have a focus. We took the opportunity to do some travelling. I went back doing some supply work but then COVID hit followed by Kev's shock diagnosis. Courtaulds was a big employer in Derby and our friend Mark worked there too. Being a Derby County fan is not easy lol. You may or may not know there has been lots going on off the pitch never mind on it! We went on Saturday - fantastic atmosphere and a hard fought 1 - 0 victory. 
 

I'm sending healing hugs and hope for your dad to get rid of those pesky kidney stones and start to feel better. Thanks for being brave and replying. I think of you all often even though we've never met.

keeping the faith as always

Milly 
 

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 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