Awake and up all night

Thank you,

I just feeling bit scared now as we've been told mixed things like it could be inoperable due to varices then doc said he didn't have a clue as he read it off screen as he was passing. Hubby was admitted as throat closed up. Multi team due Tuesday but he got to hospital before this meeting to be on Tuesday.

Blame myself for missing something,  we went to doc and tests for things 18 months ago for a few conditions.  Clear endoscopy and biopsy then. Varices they treated with blood pressure tabs. Visits to numerous departments. 

My husband has bicuspid valve so any tiredness etc always put down to that. He aged shockingly after pandemic when he changed type of diabetes lost 4 stone and emergency readings from test were misread by one then emergency letter spotting it was never sent so l took him to hospital that time he got so sick and we didn't know why

He aged and was like a 90 year old his face almost unrecognisable.  GP didn't get it as we moved and they'd never seen him before and we didn't see his family.

He did put on weight but it has been confusing me why he looks so old he's 60 now. He has always been in denial about how he's aged overnight. But that scares me too with this news that could it have cancer all along and these sort of sudden ageing things were misunderstood. 

Thanks if you see post l wrote to millibob l think he is, I'm scared now what will happen to hubby as its so advanced by look of it and we did have tests and were told in liver clinic there was nothing else to look at with his non cirrotic issues.

It's the silly mixed messages from every passing doc acting superior and saying bad results for you no idea why then walking off. I used to be a Samaritan leader for 10 years and I'd never speak to people like that it scares me they as so unemotional and don't seem to see they are acting in a crap way.

Can't sleep and afraid hubby is terminal or something and I'm terrified that they wont be able to give him a good shot of a length of survival time

Hello Dingg 

Thank you for your post - and I am so sorry to read the history behind your husband's issues. I am not an Oesophageal cancer expert (I hang out on the Prostate Cancer group) and I know you have been posting on the Oesophageal Group and don't wish to step on any toes there.

Have you a list of questions for the meeting on Tuesday? I know some will be hard to ask - can you take someone with you for support?

Here's a link to help you with your question list:

Questions to ask your healthcare team.

Remember to take a pen and paper and ask for a copy of the meeting notes to be sent to you.

I hope you get some answers on Tuesday to enable you both to move forward.

Best wishes - Brian.

Good morning 

All quiet on here overnight, has everyone slept well?

H 

Not too bad here. Took me a while to get off and up early for hospital appointment this morning. Hope you slept too xx

Dingg, sweetheart, thank you so much for letting us know how things have been going, but I'm sorry to hear how difficult they've been for you all. None of those have been helped by the attitude of some doctors, but I pray you'll get definitive answers tomorrow that will tell you exactly how hubby will be treated for his condition.

As far as I was concerned, I never attended my OH's MDT as he'd already been admitted and I got a phonecall from his oncologist, telling me he was stage 4 laryngeal cancer and radical surgery was his only option. With only having information about the MDT from his CNS, I urge you to take your son, if that's possible, with you tomorrow, so you'll be able to hear first hand what their plans are for your hubby. I was totally alone throughout sweetheart, and I don't want the same for yourself.

Please stop blaming yourself love, as you've had no control over a dreadful sequence of events. Now you must gear yourself up for what you're going to find out tomorrow, and take things from there. I'm hoping, more than I can express, that a way forward for yourselves will be given.

Sending so much strength and love to you all sweetheart, and please don't lose hope xxx

Good luck for your appointment this morning Julie. Sending you hugs sweetheart xxx

Hoping your appt goes well, Julie. I  

 Gill H Appointment went well. No evidence of bone damage from the myeloma on my scan which is good news. 

Doctor talked through cycle 2, which is the same as cycle 1 and asked how I have been finding it all. Talked through the stem cell transplant which will require a stay in hospital as I will have no immunity.  Sounds a bit intensive and scary but I'll worry about that later, it's 3 months away. 

Just got to keep looking forward, be positive and stay strong . 

Hope everyone is ok this morning xx

So sorry for how things are Dingg.  I

i think in most cancer services the patients don’t attend the MDT meeting themselves.  The different doctors, nurses and other involved professions discuss the patient amongst themselves to come up with what they think is the best way forward/what options there are.

After the first MDT about me I had an appt with my respiratory consultant who told me about the discussion and what they were recommending.  Following my biopsy, they changed their minds and that consultant explained their discussion and why this was.

When there was a move forward without explanation/discussion with me, I  spoke to my MacMillan nurse (she is part of my MDT) who was brilliant. She talked me through the options considered and why they were recommending surgery as my only good option.

it makes such a difference when someone actually listens to you and explains things clearly, even if there some things you’d rather not hear.

i hope you are able to take someone with you.  Apart from at my first appt. My sister came to take notes and be another pair of ears

I know some people ask if they can record the consultation (as the extra ears!)  Not everyone will agree to this.  For example my surgeon made it clear he didn’t want to be recorded and I hadn’t even asked to do so!

In terms of blaming yourself…… when I was first told it was almost definitely lung cancer, I said, “well, I’ve got no one to blame but myself”, the consultant was very clear that blame was irrelevant and unhelpful (said in a nice way)