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

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

Hi all,

Hilts  - 'Keeping Faith' is a drama and yes I understand your reasons for saying it and I hope you don't mind me using it! Your husband has done so well - really positive. Mine is still in step down but for saying how critically ill he became he's doing well. He had puréed salmon, potatoes and spinach for tea! 

Lee - you are doing so well. I think I mentioned the heat pad my husband used to help with the effects of oxaliplatin on his throat. I call the situation we all face at points during this process as 'walking the line' not looking to far left (back) and not looking too far right (forward). Plan trips/activities definitely. We went walking up the Peak District before Kev's op but each person's situation is different so do what you can when you can and make memories. People do live with cancer. I have a friend who had bowel cancer (not a good prognosis) still here and doing well 5 years on.

Redski - my husbands was T3 N1 M0 and junctional  too. Histology results show no spread to lymph nodes and all cancer removed with good margins which is good news. 
If he hadn't had the bleed on his lung  he would be home but they saved his life and he's progressing. When do you start FLOT? We had quite a wait from diagnosis at end of October until starting treatment end of January. Lots of tests as you will know. Also DPD deficiency test is now compulsory and Kev's didn't arrive at lab so another delay. However, I have to say the NHS is brilliant and thank goodness for dedicated staff. We had district nurses (like BFG) who were excellent. The cancer nurses are brilliant too - a card is given to you which has a 24 hour number you can call with any concerns. They stress that they would rather you call so they can help earlier rather than later. I'll stop there. It is a lot to take in - I felt overwhelmed and it wasn't me! Like you say hopefully this post is helping. I read them long before I joined. Felt I couldn't until I knew the plan. 

Keeping the faith! 

Milly

Hi All,

Lee - I get the croaky and weak voice too for a couple of days - I call it the Joe Pasquali syndrome, which is a bit unfortunate at my height.

Redski - I was a T3 N1 M0 too - one of lymph nodes flashed up on the pet scan.  This was confirmed with the hystology (it was the only 1 out of 21 they tested) but they said it was on the periphery - i.e. hadn't got into the plumbing so to speak.

I'll also back up what Milly said about support - when I phoned up the hotline about the potential dvt with my first picc line, there was no messing about - straight in, confirmed with a quick scan, and picc like removal.  I was also given the contact numbers of the upper GI specialist nurses - who not only answered on-going questions, but also appeared to be able to work miracles if anything needed to happen quickly.

The only other thing to mention which is consistent throughout the challenges on dealing with this is your fitness level before the operation.  It's a strange combination of getting as fit as possible - not just cardio-vascular, but strength excercises too - and also keeping the weight up as this will drop off after the op (although my dietician reckons I could still afford to lose a few more pounds).

Ray - hope you managed the brick wall (over it, under it - or my favourite, straight through).

Hilts - keep up the news on your hubby!  I've just found out that although there are plenty of carbs in beer, there is little sugar (which I seem to have developed a reaction too if I take too much post surgery, and excerbated by the chemo) so am looking forward to trying my first pint in what will be nearly 18 months (I'm a real ale man).

Cheers

bfg

Hi all,

Latest update on my husband. He has had fluid in his chest cavity which they were hoping would disperse itself.However it didn't so CT scan followed by a procedure to insert a small chest drain this afternoon. All OK and he's feeling better already. The fluid is  a result of 
the bleed on his lung and trauma (2 major ops a week apart!). His surgeon spoke to me which helped.

So hopefully this will aid his recovery. Still in step down unit. I've not been allowed in again which I can only take as a positive even though I'm desperate to see him.

Redski can only reiterate what Bfg said getting fit is key. If you are fortunate to be able to eat I suggest that you  gets lots of protein, carbs, fresh fruit & veg into your diet. I also bought manuka honey and this was nice with lemon as a hot drink whilst on chemo. My husband joined an active recovery program through NHS via zoom twice a week after chemo. Hilts suggested going up and down the stairs for 10 mins which he built up to! It was a good suggestion as it's surprising how hard it is to do.  Walking  up hills especially in Derbyshire was so good for the body and soul. Of course during chemo it was walking a shorter distance but he walked as much as he could. We also just went out in the car and had a picnic - just to get out. Your mind is just as important as your body. 

Prepare and ask for all the help that you need, as bfg said the GI nurses are a great source of info. Everyone is keen to help. Physiological help is a available too. An holistic assessment is made (you've probably already had this done).

Hope all goes well for everyone and yes Hilts your husbands recovery especially beer drinking is certainly something to aim for in the future.

Keeping the faith

Milly

Hi Milly,  I'm glad it sounds positive.  You are right about the diet-its incredibly important.  My Dad has been able to swallow a salad today (which is a bog improvement from the last 3/4 weeks) - i guess the chemotherapy I'd having an immediate effect. 

Lee

Hi Lee,

Good news re your dad being able to eat more and salad is definitely a good choice. You wouldn't fancy salad if you were here - it's not stopped raining all day! We are having a curry to warm up!
 

Keeping the faith (can't not do this now Hilts!)

Milly

Hi y'all, 

Millie- of course I don't mind you using 'keeping the faith'. I probably nicked off someone else anyway LOl- just seems to 'fit' with what we are all going through x As for your guy. I think it would be fair to say most of the 'victims' on here have had some complications, there are a few bends/ dips in the road, but the care is sooooo good, that whatever crops up they are on it. So 'keep the faith' LOL, he'll be home before you know it x Enjoy your curry. It has been lashing with gales all day here too.  

Thinking of curry- my guy is now 5 months post op and about 9 weeks post last chemo- he is eating quite literally anything he fancies. So even in your pukiest moments, know that it DOES get better with time.

BFG- husband has now gone down pub on this 'glorious' spring evening. He is also a 'real ale'kinda bloke, loves 'experimenting' with different 'specials'. You are right with the sugar and carbs in Beer thing, but ever the scientist he supposed one of those 'glucose' tabs (diabetics use) would counteract any dumping from beer- funny worked a treat. So he now thinks he is laughing all the way to the bar.......

Redski- the getting fit stuff. It made SUCH a difference to him. He 'invented' this stamina thing  rather than fitness perse thing. Walking up and down the stairs, not at speed, just as you would normally. It is a killer, I managed 1 minuet LOL he worked up to 10 mins blimey! They give you this lung expander thingy- fear not , not one of those 1970's spring thingies and you gradually build up your lung capacity over a few weeks. Can't tell you exactly how it helped as we don't know what he would have been like if he hadn't done it, but he was up and out of bed in ICU within 24 hrs and walking around the ward by 48 hrs. Thingy seems to be the word of the day....

I am afraid though I have to 'disagree' with the 'healthy diet' stuff. My view that he used to eat a reasonably health diet before and still got OC !!!. Most of you will know that I am a great believer in the 'Keith Richards health promotion plan' - I mean how on earth is that man still here- love the guy !. I think what the OC business has brought home to us it that we are all only here once and  it sharpens the mind into enjoying it !The objective before surgery is to put on as much weight as possible! I am not talking sumo wrestling size, but you will lose it over the course of treatment. Enjoy it. High protein and high fat, we didn't bother too much about fruit n veg, as nice as it is, we went for your Rhoda's cream, jersey milk ( normal for us anyway), suet puddings, belly pork, etc etc. When he was having trouble swallowing, everything was swimming in olive oil, and cheese melted in everything. Ice cream every day mmmmm

Lee- whatever you Dad wants to eat, love it any enjoy it. Salad is probably quite tricky to get down, so if he has got that down with no probs, then obviously chemo is shrinking the beast.

As ever I can blather on for hours. But I genuinely like 'chatting ' on here and he is down the pub, kids are probably fighting upstairs!

Y'all keep the faith

HILTS X

Hi Hilts,

Great to hear about your husband! Yes I agree definitely eat what you enjoy/fancy. My husband had Birds cream cakes/sausage rolls/full fat milk as well as all the protein etc. He managed to gain weight.
 

Just spoke with hospital and he is OK. It's so hard not seeing him. He was doing so well after first op and was up walking etc. Such a shock when he suddenly became critically ill. It's been a tough day again as he became unwell again. Procedure was going to be done yesterday but wasn't (maybe emergency cases). 
 

Re IMT training we asked about it but he wasn't given it. He does have a device which he was using after the op and was hitting the top. Surgeon said he was way above the expectations in every way.  Anyway just got to keep going - he certainly is doing. 

Keeping the faith

Milly
 

Hi Hilts,

Great to hear about your husband! Yes I agree definitely eat what you enjoy/fancy. My husband had Birds cream cakes/sausage rolls/full fat milk as well as all the protein etc. He managed to gain weight.
 

Just spoke with hospital and he is OK. It's so hard not seeing him. He was doing so well after first op and was up walking etc. Such a shock when he suddenly became critically ill. It's been a tough day again as he became unwell again. Procedure was going to be done yesterday but wasn't (maybe emergency cases). 
 

Re IMT training we asked about it but he wasn't given it. He does have a device which he was using after the op and was hitting the top. Surgeon said he was way above the expectations in every way.  Anyway just got to keep going - he certainly is doing. 

Keeping the faith

Milly
 

Thank you for all the really helpful info and tips, I really appreciate it and will get exercising ahead of chemo and surgery.

How long did people have to wait between getting their Picc Line fitted and then starting FLOT ?

+ Great update on your other half Milly, thank you for sharing and he sounds like he's motoring out the other side now !

Hi Redski

Same day service on both occasions.

You turn up on you first FLOT day, PICC goes in,followed by the juice,

BW 

Hilts

Thank you Hilts !

Hi Redski,

Everyone is an individual but I do think general tips are helpful. Like anything you can choose what advice suits your situation. Just knowing others are either on this journey whether at the start, in the middle or after all the treatment has certainly helped me and also helped me to give suggestions to my husband. The advice of keeping or preferably gaining weight was so right but this isn't possible for everyone. Again getting as fit as possible was such great advice. 

Re picc line it must vary as my husband had his a couple of days before he was due to start FLOT. However due to the dpd delay he had it in for over two weeks. Again it may vary but the district nurse team came in to look after it and also do bloods. The hospital that you are under will give you all the information and we were allowed a visit to where chemo takes place so I went the first time he received FLOT and this helped me enormously to know what happens. 

The obvious one is writing questions that you want to ask and my husband keep a small note of side effects and solutions in prep for hopefully the next round. As I'm writing this I'm having a bit of a wobble as he is still in Step down and it's not easy. However the surgeon and his team are excellent so ....

Keeping the faith

Milly

ps I've realised I may have confused everyone reading my previous post. After his first op he was exceeding expectations but unfortunately after having to go back to theatre and be operated on again he has had to start again. Fortunately the actual original surgery is good, histology results are the best we could hope for but the internal bleeding on his lung has caused some complications which is why he has spent nearly 3 weeks in hospital mostly in ICU. So many doctors come to see him and everyone says the same 'you are so unfortunate that this happened'. The team and Kev are doing everything they can to get him better. 
 

Hi...my Dad has his picc line 1-2 weeks before the chemotherapy started. Just a bit of info for everyone- my Dad has had his first round of chemotherapy starting Oct 2020 and it lasted for 6 sessions and consisted of 5 days with a slow release bottle (1 day in hospital and the other 4 days at home/walking about). My Dad has just started his second round of chemotherapy together with antiangiogenic (not sure if spelt correct) and this will consist of going to hospital one day per week for 4 hrs and this will last for 2 months. I am just writing this down as we are going through the Spanish health service and it maybe slightly different to the NHS. 

Keeping a diary is a very good idea - my Dad has been doing this and now he is referring back to the first sessions to get memories of what to expect. From the first session to the present day, my Dad has more or less constantly felt sick, he has had diferent spells where he has felt weak but also had plenty of times where he has felt good and strong...as you've previously mentioned, the journy has definetely been like a rollercoaster! 

Lee.

Hi Lee,

Chemo definitely varies and seems to be more personalised than I realised before all this began.

Presumably he has tried changing the anti sickness meds. My husband had an additional one beginning with O sorry I can't remember what it was called. I'll try and find out. Also I bought ginger biscuits, ginger ale and chewy ginger which my husband ate. It did help but the meds are obviously the best solution. 

As you say make the most of the better days. 
 

Keeping the faith

Milly

Writing all these tips down, thank you ! Exercise, balanced diet + some fattening up indulgence, diary to track days / side effects - all really useful and appreciated.