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

Thanks for the reply Lee and it sounds like you and your family are giving your Dad so much love and attention through his journey, it's really lovely to read !

I meant for my chemo, I'm not sure whether to have the port fitted or a picc line. Do you know which fitting your Dad used for his chemo and whether it was easy / hassle free / no infections / blockages etc - I was asked which I wanted and I have no idea !

Thanks for your help 

Hi Redski,

My husband had a picc like. I know a friend who has a port but don't really know the difference? I do know that the picc line goes to a central vein. Hilts  may help being an ex nurse and all that! 

Re FLOT ask away, I am a concerned onlooker. My husband coped pretty well. Yes there were side effects but he managed them. He had a heat pad for his throat as he had a slight reaction to the Oxaliplatin. At least it's warmer - winter when he had his FLOT and during lockdown! He drank lots of water and took warm boiled water in flasks and a cup for when he woke up at night. Seemed to help him. Hope all goes well. Cancer nurse should be able to explain pros and cons of port or Macmillan nurse. I used their help line. I found nurses good, emotional support not as good. Although sharing your feelings/fears with a stranger can help.

Keep the faith #Hilts

Milly

Hi redski,  my Dad has a cafeter fitted just below his left shoulder- everything goes through there eg. Weekly blood tests,  chemotherapy,  pre scan drugs ect

My Dad has not had any issues with this and easy quite easy and straightforward 

Hi

Milly glad to hear your husband is on the mend. Its a long slow road we are on.

Hilts glad to here the husband has returned back to work a bit of normality for yourself whatever that means in this mad world

BFG good luck with the final 4 this Thursday it will all seem a distant memory very soon.

Leechap definitely not the nicest thing this chemo but for a bit of constipation or even tingling the benefits outweigh anything else we just have to grin and bear it and be glad we have strong family's supporting us.

Redski

I have had a Hickman line (central line) and also a PICC line (on my second PICC line now), I believe the port version is the Hickman version, my understanding is some staff  prefer this version due to it not blocking as easy for administering drugs and taking bloods, In my experience the PICC line is a lot easier to install and remove, my personnel issue with these lines is my body tends to rejects them and gets infected and i end up on antibiotics.

Hi Redski

I didn't get a choice and had a Picc line.  I had a dvt with my first one last December on my first flot round,  which resulted in blood thinners for a few months, but they moved it to my other arm (radiologist was impressed,  saying it was the longest ever picc line for him). So I'm currently on my 3rd picc for my 2nd round of flot.

Other than the dvt which is not uncommon, I've not had any infections - but there are others in this chat who have.

Picc is relatively hassle free,  just need to ensure the end is covered and strapped back onto the arm to stop it irritating in between cycles.  They gave me an elasticated cover - nothing fancy - to protect it in the shower.  Nurses paid a visit day after chemo to remove the pump,  then a week later to flush, and then to take bloods before the next cycle. 

As others have said,  ask away - we don't really shy from providing our experiences, side effects and occasional gory details. 

Lee, Milly, Ray and BFG ... that's really helpful, appreciate you sharing - makes sense and is exactly the sort of intel I needed - thank you.

Also, sharing your experiences has really helped knowing what's ahead, including all the bumps in the road - but that there is a pathway through it all, thanks.

Hi y'all

Welcome to the club Redski- as you can see we are increasing by the day/ week. Full details please  for nosey Parker (me). Or can I take a wild guess bloke, 50-60, trundling along, then bingo, bit 'trouble swallowing- endoscopy, expecting maybe ulcer or 2- then a ticket for the 'biggest' rollercoaster in town!

yep, this board has kept me going through all the 'rollercoaster'. I know this sounds weird, but it really help knowing that you/ us are not alone, for better & worse.

I'm am not sure if OC is actually on the increase, or its that we can find each other these days on places like here.

Millie- Didn't know there was a programme 'keeping the faith' mine is not a religious thing,, but a saying from my 'dissafected' long past youth.... scooters, bank holiday runs, northern soul, ska, and the one and only Stranglers x. It was a bit of a 'scene' saying. Always together type of stuff. No matter what -type of saying.

Redski- I digress ( a lot). Don't think my husband was given a choice. He had a PICC line x2 behaved itself until the 7th cycle, but managed to keep going to the 8th. I used to be a nurse, yes, but that was in the 80's. I'm not sure any of these longer term lines were even invented! So everything I know has been from the 'lived experience' All the chemo and especially the surgery is/was nothing like I remember it or imagined it to be. It is incredible how super slick the whole thing is.

A sense of humour is something to really hold on to. If you can't laugh what can you do! Even during the 'yuk' times, we had such a laugh watching really un PC stuff on you tube etc. 
 

what can I say all - current meltdown over, feeling more chilled and as ever 'keeping the faith'

Hilts

Thank you. Yes, this board / post is excellent to keep it positive and follow others journeys through it just as I landed into it.

I'm 43, been through staging and am T3 N0 M0 so starting FLOT then surgery and FLOT again. Not sure how I'll cope with FLOT, been trying to keep working from home through it all so far to keep busy and mind on other things. Like most have said here, the staging / waiting for results / uncertainty etc. was really tough and it's perhaps a bit easier now just knowing there's a plan and to get my head down and focus on cracking through it.

I didn't have the trouble swallowing bit, as I've found out I don't have a lump tumour but more subtle spread around the stomach and oesophagus junction ... I was more struggling with heartburn, indigestion and not being able to eat as much as I previously could so knew something wasn't quite right. Had a few GP appointments stating IBS. Got a referral to a Gastro and got scoped and then bam, like you said the sledgehammer news comes in !

Ah, bless you Redski- I swear I am not religious (: nothing wrong with it, but really not my thing (:

yep, if you look through my old posts (click on the blue hilts thingy and then go into reposes etc) you can probably tell utter hysteria at first. I'm not sure if everyone would agree , but that initial bit of diagnosis and staging is the absolute worst worst part.

The emotional side of stuff is far far more difficult to deal with and understand than the physical stuff, but I would say that as my husband is the victim, not me. But guess what, no matter what *** this throws at you you WILL get through it, and please share anything that is on your mind.Ask away. We are all but fellow travellers. 
There are a few around on here that are well past post op. Doug drops in occasionally, he is a year post treatment.

Distraction has been my saviour. Keep my mind busy doing something, anything other than thinking and worrying about IT.

My husband was junction as well, we think ! LOL, we/ he didn't really care where it was, just wanting it GONE(:

RayB- yep he went back to work, but 'over did it' not physically, but v v tired, exhausted so he'll go in 1 day for a bit then 2 for a few etc, but he has now crossed that line of knowing that he can go and not everything is about cancer.

To all- he managed 4 pints last Friday and is going to the pub tomorrow to watch the football- I have no doubt whatsoever that he will try his 'experiment' again !
So Redski, and those who are approaching the end- of treatment !!!!! That it does get more back to normal as the weeks go by.

Lee- know too that you and yours are doing a fab job. Yes, of course it is tough, but look at what your ARE achieving. He might be 'inoperable' but there are several around on here who are, but are plodding on. 1 guy I always mention is 'davek' who is 7 years into 'inoperable'. I think symptoms are blasted/nuked when they play up. I was talking to someone, who knew someone (know how it goes) who has 'bone cancer' and been managing the symptoms for 20 yrs!!!!!- so get planning some nice family stuff. As my old Nana used to say (died age 95) " get out there and make memories "

keeping the faith

Hilts

Thanks hts...as usual,  kind words of support.

My Dad started his second round of chemotherapy Tuesday just gone-feeling very tired last 2 days and voice has gone crokey and week. 

We take day by day and keep regrouping,  replanning, and trying our best to keep on the positive path.

Lee

Thanks hts...as usual,  kind words of support.

My Dad started his second round of chemotherapy Tuesday just gone-feeling very tired last 2 days and voice has gone crokey and week. 

We take day by day and keep regrouping,  replanning, and trying our best to keep on the positive path.

Lee