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!

Hi Karen

I think its a male thing they are brought up to be tough ( society we live in) and so I think they dont like to complain.

Hubby does same he didnt tell the Dr how bad things are ......

Hubby says he is getting more saliva ? I know there are meds /patches that can reduce this so hopefully Dean can benefit from this...

He should have a scan after treatment to see whats happening.I would ask to have copies of medical letters sent home if not already getting them. Our area doesnt unless you opt in but only found out recently.

Macmillian are good can chat online to nurses or counselling to support Dean if he is open to it.

Also for his partner and yourself 

Its a marathon so support is crucial.

I have sons too so Mum hugs Karen 

I hope some of this is useful

Best wishes RB 

Thanks a lot Rhubarb (Do you like rhubarb?) Yes its helpful even to chat to someone who knows and gets what this is like. Hugs back to you.x

Hi Karen its okay

To clarify and to lessen your worry by comparing to something that doesnt apply....

Hubby has been palliative  treatment from the get go. He has secondaries else where

So yes he had treatment which gave him some relief for a few months

Athen it has grown again hence more treatment. .

The first time after completing the chemo the neurothapy improved  somewhat which was good and able to be more active etc.

The side effects are cumulative so this has flared it up for him 

Its hard to watch let alone go through it. And nothing I can do nor say makes it better .

Encourage Dean to be open and honest They can reduce the doses to make them more tolerable. 

It really is one day at a time Karen rotten cliche that it is 

And I looked it up the term for all this rollercoaster of emotions is anticipatory grief .....our loved ones are going through it and so are we 

It helped to know its a real thing

Any how I hope Dean gets some relief on Monday

Hubby turn Tuesday

Take care 

Lol actually No! glad its helpful 

And thank you too it really is helpful 

Hugs 

You're so right about nothing you can say or do makes it better, but we keep trying don't we, and we are there if they need us. Dean always says how lucky he is to not be going through this by himself, as he knows there are plenty of people who have absolutely no one & go home to an empty house.

Best vibes for Tuesday

Thankyou Karen 

Ditto for Dean 

Hi all so today I am now sitting outside the Cancer unit  and about to go in and have my CT scan done to see how the chemo has gone. I’m so scared of it as it’s yet another result to wait for. The operation absolutely terrifies me however so does not being able to have it. This silly damn disease just turns people into irrational looneys. You ladies that care are the most important people in our lives and it sometimes just needs a hand hold and nothing more. Our moods are up and down constantly and any time we seem irritable or just a moody git really is not meant against you. Sometimes just going through the doors of the hospital is so horrible but we try and pretend it’s ok. Thank you for all you do 

Hello Boxbrain0

Just picked up your message and I am moved at your words.

And want to say here for handholding venting hysterical laughter ( more me probably eek)

And any other shares.

I hope the CT scan brings good news / and the Cancer is doing a runner for you 

Sending Hugs

RB x

Everything you say I can identify with as I see it with Dean. He's been a right mardy git many times - still he was even before all this!

I hope you get really great results from your scan. As you have been able to eat so much more easily I'd take that as a very good sign its shrunk, but I get it that you don't try and anticipate with this.

Deans terrified of the op as well & I understand why. On the one hand you're 'lucky' if you can have it as so many can't but it looks an ordeal. At least you will have an amazing story to tell for years to come once you are through this part of it. I was only thinking this morning if only we could fast forward 12 - 18 months and it all be behind us.  

Hi Karen

Oh yep mood swings especially from steroids not fun to be on receiving end and horrible for our loved ones going through it.

A heads up the cancer and the chemo can cause low iron /anaemia which can add to the fatigue .

Hubby having to have blood transfusions to bring it back up so bare in mind and keep checking blood results.

Obviously not being able to eat a good diet doesnt help either.

Fear of the operation is understandable its not a small thing to undergo. Its not an option for hubby so cant say more than that.

Re looking back 

We have been on this path for over a year you quickly become all about the cancer and adapt to things but 

I see we are still dealing with "the new" every day

Sometimes it wears you out and you really dont "get it right" for your

Loved one but we are doing our best and we are all human.

..ultimately it really is one day at a time 

Id say 

Do stuff to keep you a float cos its a long road.so you dont lose yourself and also gives you the energy to be there.

I take my hat off to anyone enduring cancer treatments they are all awful grueling and traumatic. 

Strength to everyone

RB

Hi Karen

Oh yep mood swings especially from steroids not fun to be on receiving end and horrible for our loved ones going through it.

A heads up the cancer and the chemo can cause low iron /anaemia which can add to the fatigue .

Hubby having to have blood transfusions to bring it back up so bare in mind and keep checking blood results.

Obviously not being able to eat a good diet doesnt help either.

Fear of the operation is understandable its not a small thing to undergo. Its not an option for hubby so cant say more than that.

Re looking back 

We have been on this path for over a year you quickly become all about the cancer and adapt to things but 

I see we are still dealing with "the new" every day

Sometimes it wears you out and you really dont "get it right" for your

Loved one but we are doing our best and we are all human.

..ultimately it really is one day at a time 

Id say 

Do stuff to keep you a float cos its a long road.so you dont lose yourself and also gives you the energy to be there.

I take my hat off to anyone enduring cancer treatments they are all awful grueling and traumatic. 

Strength to everyone

RB

Hi all. 
Hope everyone is as well as they can be. 
I can’t remember when I last posted on here , I’m assuming it was before the operation. 
im out after 11 nights in hospital im told I recovered extremely well. I won’t go into any gory details unless asked.  I’ve got a pipe for evening feeding ( 15 hrs drip fed with my own portable stand )  and I can eat what is described as sloppy food.

Shortneass of breath is a bit of a *** but I think that part of that is psychological. 
Once I’ve recovered enough it’s back to the chemo for another 2 months. 
typically my body hair has just started to regrow

Hi Mouser good to hear from you :⁠-⁠)

How is it being home ?

Sending best wishes

RB

It’s great to be out as it’s another box ticked off on the recovery road. 
I’ve had to get a book so I can write down what tablets I’ve had and when. 
Have to crush them and dissolve in water before drinking them down. 
Had my top off in the garden today thinking that the sun will help heal the scars and where the lung and abdominal drains where. 
kept family away while I was in there and now they’ve all been round to visit which was lovely. 
can’t beat sleeping in your own bed even if it is only 2 hours at a time x

Hi Mouser 

The weather is being kind here too.

High factor suncream ....and moisturise your scars will help.

Glad you got to see your family and deffo own bed and home cant be beaten.

Re medications...maybe some could be liquid form worth asking gp if they are long term ones.

Hope your sleep settles down as you get into your home routine

Very best wishes

RB

It’s so very good to hear that you are home and able to enjoy the weather a little. I have used you as a sort of barometer or benchmark as I will get my ct results on Thursday from my oncologist and find out when the op is as it’s been 3 weeks since my last chemo. I’m bloody terrified of the operation but hearing that you are doing ok is great and gives me a little peace of mind. 

Thanks Rhubarbdragon I’ve a few that are liquid. 
I can actually crush them and use a syringe to feed them down the feed tube. 
Boxbrain, yes, I was bricking it myself but once you get a date you end up just wanting to get it over with. You just turn up and let the experts crack on. They know what they are doing.

its a short day for us as we know nothing about it  

we go to sleep and wake up a second later 

it is an awful long time for partners and family 

Mine was 8 Weeks after last chemo. If that helps 

Well done! Glad to hear you are doing well and you've got the worst bit out of the way!

Hi just thought I would check in and see how you’re doing. I got a date for the operation which will be on the 2nd June. Not looking forward to it but it’s another step forward I suppose. 

Hi. Good you got a date. It must be a daunting prospect but at the same time knowing any remnants of it will be gone.

Dean just had his 2nd chemo yesterday after a 5 week gap between that and his 1st one due to low platelets. Did you get a kind of burning throat as a side effect from chemo? How do you feel after your 4 chemo sessions now - eating better? have you been advised to do anything specific re fitness ready for the op?

Hi as for the burning throat. Yes I had that periodically. I have to be honest it has been nearly  5 weeks since the last chemo including the 2 weeks straight after. I am feeling much weaker than I was and emotionally exhausted. I have been told to do as much exercise as possible between now and the op so that recovery is quicker. I am worried about the second lot of chemo as I will be less able to deal with it after the op. Eating is still not bad but certain things taste different. Keep feeling that I have only 3 weeks until everything changes for ever. People keep saying that it’s good that the operation is coming quickly as I can get back to normal sooner. I smile and say yes but the reality will be very different. I wish things could go back to how I was. I had never even heard of this type of cancer before. I have spent the last 3 weeks doing every little bit of DIY I can as it may be a while before I can do much around the house. Sorry to sound so down but maybe Dean might get like this and it’s when he will need family the most.