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

Yep - generally do for a couple of days other than an increase in grouchyness which is probably me.  I get the sensitivity to cold but it tends to be more at fridge temperature that I notice anything.  It wears off though.

Just be aware though that this is just me - each of us had there own roller coaster journey.  

I've been a bit cranky today too, but not sure if that's just me or the treatment

Is the cold sensitivity from the Oxy part of the FLOT ? They scared me with the talk of throat spasms etc from cold drinks so I'm completely avoiding them as it sounded scary ! Are you OK with cold drinks then BFG ?

I noticed a general increase in pain in the fingers when reaching into the fridge so air on the side of caution and don't go into the freezer or take ice-cold drinks or ice cream. It's just the routine I got into and it dissipated between cycles.

And yes it's the oxaliplatin part of flot - I get told off for googling stuff like this.

I also do go slightly husky when I talk.

The wife might be impressed if I start sounding a bit raspy in the voice, haha !

Back to the hospital in 15'mins for the bottle removal - cannot wait ! I've nearly caught the line soooo many times, it's a real faff, but obviously worth it of course !

Hope you're back home safe now mate.

Cool.  Yep back home. We've the district nurses come around for removal but back into hospital for the final one as they remove the picc line in there.

Big achievement and milestone getting that out mate, fantastic.

Will be me too, one day later this year hopefully !

Oh - and well done for getting past the first 36 hours!

Hi all and welcome Jae!

I know it's not a chat group that you would choose to join but I think we are a friendly lot who only offer advice/suggestions when asked and generally wait to hear from everyone if they want to share/ update. No pressure - just understanding. As everyone says each person's experience is different however reading the posts certainly helped me to help my husband and helped me too!

Well done for starting your FLOT.  My husband wore gloves to go in the fridge and avoided all cold drink. He did have a small reaction to the Oxaliplatin which is why he used a heat pad on his throat for a few hours during and after it was given. He also took a flask of hot water and one with tea.

My current update is he has moved to the general ward for the first time on Tuesday. I've been allowed to take him outside in the wheelchair - just at the front of the hospital so fresh air with a bit of Carbon  monoxide thrown in lol. So far so good, 

Well done bfg too so...

Kerping the faith

Milly

Hey Milly

Great news on the move. Our phrase back in the day was slow and steady, and even now - 3 month post op, improvements are being made and felt. 

Breathlessness was a huge challenge, lung function reduced due to the op, but with the breathing exercises and slow and steady mantra....

Keeping the faith  :-)

Bfg

Thanks Bfg,

Yes slow and steady is the new watch word. He does find it a bit frustrating after making, as his as the surgeon said, a 'miraculous recovery''. 
Now just over 4 weeks post first op and 3 weeks second. 

Keeping the faith

Milly

Thanks Bfg,

Yes slow and steady is the new watch word. He does find it a bit frustrating after making, as his as the surgeon said, a 'miraculous recovery''. 
Now just over 4 weeks post first op and 3 weeks second. 

Keeping the faith

Milly

Hi everyone- just an update,  my Dad is having a rough time of late, he is on the 3rd week of the second round of chemotherapy.  He has no appetite, feels really sick (and has been violently sick but nothing other than water is coming up as he's not been able to really eat anything) and has lost more weight. He is now regularly having extreme hot and cold spells - to the point on the bed/sheets being wet through with sweat and then 10 mins later my Dad is shivering and wrapped in blankets/jumpers etc! - has anyone experienced this?

My Dad's swallowing has again improved (due to the chemotherapy) but unfortunately with no appetite and being sick as soon as he attempts to eat, he isn't really taking any food in. It as though we are taking 1 step forward and 2 back!

Lee

Hi Lee,

I'm very sorry to hear that your dad is having a rough time. I am unable to comment/suggest anything re his symptoms as I haven't experienced these. My husband has had anti sickness meds and injections whilst he has been in hospital (still in on the General Ward now). However I would suggest that you speak to the cancer nurse/oncology to get some advice/help. 

I really hope he improves soon. 

Keeping the faith

Milly 

Hi Lee

All I can suggest is a repeat of Milly's comment.

Speak to the support team / oncologist - there are many different anti-nausea drugs available, some worked for me on the 1st lot of FLOT in December, but didn't on the 2nd round - so was changed to something that did work. 

Cheers

bfg

Thanks to both of you,  Dad has felt a little better today and has gone for a walk. He has this week 'free' from chemotherapy so the break should do good 

Hi y'all.

Been missing in action.......of on hols, back now. Did miss you all tbh. But sun shone all week. Update re husband..... he is now almost 6 months post surgery and about 10 weeks post 4th post op chemo. All he has now is a cough, which the MDT are on. Upped his omeprazole to 80mgs a day, which has helped and he will go for the 'beloved' scope at some point,

Anyhows his fitness was seriously dented by the whole thing- never been a gym bod, but very active. He managed to go to one of those aqua parks obstacle course thingy's - like the krypton factor , but in water. When you have tween kids sometimes you are 'forced into' such things, especially if your wife (me) is a land loving lizard (: He also went swimming , in the North Sea!!! Every day. Took it out of him, but he did it and I am very proud for and of him.

Enjoyed problem free fish n chips and meals with no trouble. Which is probably the first time since pre diagnosis that he has just been able to enjoy food rather than fretting about clogging, vomiting, nausea, max calories, dumping etc etc, a real milestone for him.  and he said it is the first time he has sat down for food without 'dreading it' (:

So, been reading today and I see we have a newbie! jaeofkent- welcome to the club!. Your partners emotions at the mo - I can TOTALLY relate to. I am the 'observer' husband is the victim. He reckons it was worse for me in someways. But know that you both  can ask literally anything on here of your fellow travellers. None of us are medics just 'living the dream' the lived experience- who 'invents' these crackers.

Millie- What a lovely place it was, like turning back the clock, absolutely NO gentrification at all, just as I like it. In the nearest big town,  Shops still shut on market day afternoon and all day on Sunday and almost all shops, even the garden centre/tool shop is independent. Glad your man is now on the ward- what a time of it you've had, but progressing every day. I bet your garden and most of the area's gardens are totally weed free (:

Leechap- I can only repeat what the others have said about the chemo nausea/ vomiting.Husband changed anti sickness stuff at least 3 times.  He found the whole thing a real pain particularly post op. Feeling so sick he really had no appetite and that really bugged him as now the tumour had been nuked and he could swallow stuff, he was not fancying anything due to the sick. He kept the feeding tube in post op and found that the more he shoved into that (water and feed) the less sick he felt.  A real double whammy time, but there will DEFO be a solution here.

Well- hope everyone is enjoying some sun.

keeping the faith (most of the time ) (:

Hilts

Hi Hilts

Great to hear from you and absolutely delighted with the news on the problem free fish n chips and this has now been added to my other milestone of 4 pts of beer.

Last cycle of FLOT is 17th (not that I'm counting the days).

cheers

bfg

Thanks for the info folks

Lee

Aww... that is very nice. Both he and my mother are definitely having a harder time of this than me. Almost feel like I should be looking after them! 

Best wishes to you and your husband. 

Jae 

Hi All

Jae

Yes, welcome to the rapidly , ever growing club, as I told my husband, he is seemingly "common as muck '!!!! LOL- sorry, I think I'm funny..".......

T2N2.... so NO M's , great. Seems to be around the mark of many on here. I would imagine you'll follow the same pattern of most on here nuke, chop, nuke- not that I have a crystal ball or anything.....

Completely  off subject-  but what is it with sunny days and **** power tools!!!!! Arrrg I swear , trying to chill in my garden and some ***** has spend the last HOUR whining away arrrgg. 

Anyhows, ye I totally get what  your relations are are going through. I guess for me I was about trying to make sense of it, even trying to find someone, something ,anything,to blame, the anger- had to be somebody fault surely?? Questioning- is this actually really real, the Dr have got it wrong why us, etc etc etc. All I wanted was to make it go away, how dare it 'creep into our lives' . These emotions changed virtually on an hourly basis LOL. They have changed over time, now we sit and think WTF just happened! So there will be many up's ,downs, twists and turns on this bonkers rollercoaster, but know that we are all 'timed served' experts !!!! LOL

yep , BFG another milestone ticked off for us- who'd have thought a year ago that any of us would be talking about ' how good food tastes' something that we all probably took for granted, but now every mouthful,successfully  enjoyed (without, gagging, vomiting, y'all know the drill ) seems sooo good. And for those , not yet there, you will soon enough.

Right, I'm off to see who is making all this **** racket........

keeping the faith ( with gritted teeth at the mo!)

Hilts
 

Hi Hilts and everyone!

After 5 weeks in hospital 2 in ICU 2 in step down (HDU) and one on the general ward my husband is home!

What a journey he's been on literally to the brink and back! He still has fluid in his chest cavity but it was decided coming home may do the trick of his body absorbing it - so fingers crossed. He is to be reviewed  in respiratory clinic sometime next week. Can't praise the staff enough. What happened was so unfortunate to say the least but they told him they'd save his life and they did. The consultant has been brilliant- rang me so many times and always honest but so dedicated - he came in over one weekend to see Kev when he wasn't even on call. So as bfg says slow and steady and as ever 

Keeping the faith,

Milly

Ps Glad you enjoyed Sutty Hilts and your husband is doing very well, hope procedure goes smoothly.Strange I feel I'm beginning to know you all and your support has been invaluable. Thanks!

Pps I was pressure washing yesterday hoping for Kev's return! Lol