Hi I am having the same procedure on Wednesday I have found it doesn't matter what anybody says the fear is constantly with you ,I am the same ,I don't switch off at night neither.I think my fear is to find out what stage i am at.Hope you find something to help you .

Its all constant fear. I know its not happening to me, but my son, but its constant fear as to what theyre going to say. My son will be told the stage soon as well but hasn't got appointment through yet. Keep googling what I know so far about his tumour size and no spread etc to try and predict - it's driving me mad!

Thanks, yes I know youre right. Just want to know the stage that they say it is, and the date chemo will start at last. I have wished many times that I could have it instead of my son - that's the problem with the people who love the ones with the disease, you just don't want to see them going through this & want to take it away..

You are managing great obviously, still getting out when you can and taking it as it comes day by day till you reach the end of this unexpected journey. Imagine looking back on this in the future and you'll wonder how you got through but were all stronger than we realise.  

Sorry 'Boxbrain0'  I meant to ask, after all your tests and then being referred to oncologist did you have to go see them and have a discussion then go away and wait for any other appointments prior to chemo starting? 

Hi

i went to see the surgeon who explained all about the operation and the following day I saw the Oncologist who explained about the Flot process. I then signed the consent form for FLOT and then 3 weeks later I started It. I received my after chemo oncology clinic appointment before the actual chemo one so I realised when it would start. Don’t let Dean sit in and stew about it and try and encourage him to get out of the house as Chemo has been far harder than I imagined and the last week very up and down. 

Oh yeah and don’t feel bad about looking at other people and wanting to shout *** at them because they look fine as sometimes it gets the stress out. Obviously make sure they can’t hear you. 

Thanks for that info. I am trying to encourage Dean to get out more, he spends a lot of time at home playing on his guitar which is good and watching movies with his wife. He has an infection from the surgery he had to put the feeding tube in that is now clearing up with antibiotics. He reckons he will get out for walks when the weather gets better - I said don't wait for that!

I am trying to be calm and nice & smiley to people in every day life & manage it most of the time. I'm a secondary school teacher so have to smile a lot but inwardly curse the kids!

Hope you are doing well.

I had to stop teaching 17-19 year olds with special needs after being diagnosed as they were so in your face and I was worried I would end up losing it. I miss them terribly but as you know with teaching it is non stop. 

I bet you did feel like that yes. Its hard putting a face on all day isn't it. I am scared of losing it with the kids also as the way they speak to you at times is diabolical! Deans oncology appt came through today! Friday 7th march so not too long.

Hi my name is Marc by the way. That means chemo probably end of March so not long now. At least there’s news. 

Hi Marc! Yes hoping its nearly time to start blasting that thing out of existence!

Hi Karren glad to hear your son has got a date for the Oncologist 

It moved pretty quick for hubby first time around

He has now been told he needs another lot of chemo and we already have the date for that.

Suggest a grab bag for chemo days

Something to do ...ipad etc head phones drinks / preferred food ( the soup at hospital was too lumpy for example so hubby takes own in a thermos)

Its very individual I know but having the little things helps 

Hi Karren glad to hear your son has got a date for the Oncologist 

It moved pretty quick for hubby first time around

He has now been told he needs another lot of chemo and we already have the date for that.

Suggest a grab bag for chemo days

Something to do ...ipad etc head phones drinks / preferred food ( the soup at hospital was too lumpy for example so hubby takes own in a thermos)

Its very individual I know but having the little things helps 

Thanks, yes good idea regarding taking stuff for chemo days. Glad your hubby is having more chemo to help him as well. 

Hi Karren 

Thank you and I hope things go well for your son too

Hi how is your son doing. Have you been given a Chemo date yet?  I am into week two of the second dose of chemo and it is so much better than the first one. As Mouser has said, it is amazing how much easier it is to eat now. The fatigue is a little heavy but that’s better than the nausea. Hope all is ok with you 

Hi all. Hope everything going as well as possible for everybody. 
An update on where I’m up too / what you’ve got to look forward to. 
Had an appt / chat with surgeon last week. She says procedure is 6 hours. Suppose it’s all the prep before and stuff after that adds up to the 10-12 hours I had been told.  So that’s better 

spent all afternoon today seeing anaesthetist and a pre op appt taking blood / ecg / lung function test etc. 

all went well and I came out with a date for operation 10/4  which is 8.5 weeks after my 4th chemo. ( 6.5 weeks they call it after being signed off from xxx) 

again they stress to get as fit as you can for operation. Muscle strength is what they said and make sure you use the spiro thing regularly as we need good lung capacity. 

I actually feel the best I’ve felt in a long time and knowing the operation is going to knock me back is playing on my mind. 
Therefore I’ve just booked a last minute weekend away in a cottage Shropshire. 
Fingers crossed for decent weather xx

Hi Boxbrain. So you're feeling alright then? Second dose seems better than your first dose? It's great that you can eat! Brilliant. Yes, Deans been 'staged' and chemo starts on 27th March. He has been on a couple of alternative things (I researched them as have a science background but not at all an expert) & he feels great most of the time he says. Somehow his eating has improved in the last 8 or 9 days. He did have a feed tube fitted at laparoscopy on 10th Feb but (touch wood) he hasn't needed it so far. Hes got his liquid nutrition on prescription & hes having vegetable fingers, noodles, veg soup etc. He's grateful for, but not looking forward to chemo or the op but will go with it all obviously.  

Hope you have a fab weekend away, what a good idea. It must feel counter intuitive when you feel the best you have felt in a while to then go into surgery.

1. So everyone I took the plunge and my long hair and beard of 40 years was all shaved off yesterday. It was a bit of a shock as I just don’t look like me anymore. It’s the beard that is the most difficult bit. And of course the blooming weather decides to get cold the day after so my cheeks feel literally numb. However I was very relieved to find out that my head is a good shape for shaving and has no weird bumps on it. I have decided that I may keep shaving the head but grow a long beard when it comes back eventually. I may even have some Viking tattoos on the side of my head. Yes it appears I am suffering from chemo brain mush and finally losing my marbles. Onwards and upwards. I have had the most amazing week of eating and have been out for meals and and having normal food with no discomfort or pain. It has been lovely to feel human again.Chemo again Tomorrow and I just hope that this cycle is as good as the last. Fingers crossed

Thats great re the eating and going out for meals. Hair is a massive part of your identity so it must be hard to lose that but good for you on making it into a positive. Dean has already lost his head hair since his 20s but has a big thick beard so isn't looking forward to losing that. Good luck with this next chemo.

Hi hows everyone doing? Is anyone interested in knowing about other things you can do to fight this? I'm definitely not trying to sell you anything or get commission! Just some things my son has been doing in addition to chemo etc (it starts Monday - it was put back a few days as he is having a tooth out today and they didn't want risk of infection. 

Hi well anything that can help is always worth a look at. However as you will find out the amount of meds that you end up with whilst on chemo to counteract the side effects is mad so to add anything else that you take could be a bit much. But quite frankly I personally am open to anything. It does however get to the point where all your life becomes about Cancer and this alongside the intense brain fog that comes with chemo means it becomes difficult to take information in. Another tip for your son is to always tell the hotline nurses or oncologist about every little side effect as it makes a massive difference as they can give you meds that sort it out for the next cycle. 
regards Marc