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

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

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,

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