Perpetual hell...

I’m so sorry very to hear this.  It indeed sounds like a living hell.  If you’re not sleeping as well that’s making everything worse and you’re not getting the brief reprieve that sleep can offer. 

Have you thought about calling the MacMillan helpline?  They’re open 8 - 8 every day, including Bank holidays. I spoke to them yesterday  and the woman I spoke to was incredibly kind and knowledgeable.  She also helped me come up with a plan of action for my own situation….. so not just listening empathetically.  They do offer services for relatives and friends, not just patients (it was suggested I tell my sister about the help line)

Regarding PALS, you might be best to go into their office at st George’s.  They can take a long time to respond to emails/telephone calls.  And you obviously need their help/support urgently.

Sending you a hug (if you like hugs) and hoping you get some response and clarity qyickly.

Done all that.

I even had a call Weds from Prof Mary O Brien from the Marsden who is head of lung cancer & she explained everything & at that point, Mon/Tues there was improvement. After her call Weds I went up & hes declined since. His voice can just about be heard as & wen speaking. This was his worst nightmare, to be in a hospital bed like this, he just wanted to go quick, instead all dignity gone & no hope whatsoever.

He wont get better, no treatment just having  to face each day not knowing if awake or asleep. He cant even get out of bed, so being moved in various positions in case of bed sores. No happy ending here, just watching a man I've known 30 yrs decline in just over a week. Went from being out & about on holiday, to bed bound wearing a nappy not knowing me. And not one single symptom before this, not even a headache. So shock, anger, grief & being totally lost with whats happened x

So awful for you both x

My heart goes out to you, it really does.  I think when the nurse said "burn out", she is obviously aware of the tremendous stress you are under and is worried you may have a break down.  You need to take care of yourself, hard I know, but your health, mentally and physically, is important for you to be able to face what is sadly to come.

You said your husband wanted to "go quick". This sounds awful, but, if he is not going to get better, would it be quicker and kinder if all medication is stopped.  I know it is easy for me to say that as I am not in his or your position.

Ann

I havent been asked that question yet. During all of this OT/speech & language thetapies been requested Weds when he suddenly became tired & conversation went from basic to yes/no or nothing replies. And told I have to be patient.

I'm literally at a loss of what they think they'll achieve. Due to Easter its a skeleton staff one doctor for 3 wards. I'm due to go today as I didnt go yesterday. I dont feel well & have no idea how I'll manage, but no choice as no one else to go & I cant just leave him lying in a hospital bed. I couldnt sleep so still feel as exhausted as I did on Monday.

Just a nightmare on loop

Hi I am so sorry it is a nightmare I managed to sleep when he was in hospital but only because I was so exhausted after being woken 3-4 times a night and helping him dressed you sound more organised than we were was planning to make a will but died before we could they mixed up the Dnr and lost notes  I am thinking you are stronger than you know I mean travelling alone ok I am going by train to Cambridge to stay with my sister  but need to pluck up courage to book a solo river cruise having never been abroad on my own  Take care Teresa  Suexx

I've travelled alone overseas many times, I prefer solo travelling always have done. You should do it, once u do it you'll see how easy it is.

This travelling to & from hospital my cousin is kindly taking me picking me up, othet wise taxis would be £60 return trip. But I'm just worn out, cant sleep even with sleeping tablets.

I'm on my own & what family I do have wont help. So I've had to cancel hospital appointments for me, as cant be in 2 places at once. The op I need as now gone put the window as 2 months recovery & help at home, which I dont have.

We were due away again next month, thats how quick this bastard thing as come on plus the bleeding.

So at 12.30 I'm picked up & will come back as & when. My heads banging my colitis wont settle I could sleep but cant. So give up.

I know its early days for you, but travelling solo is one of the best things I've ever done. Nervous the first time then after that all was ok. Hope u get away.

Take care, Teresa x

Hi Tillyboo 

just checking in to see how things are with you both ? X 

Living in hell. Told conflicting things. Husband still in hospital, still slightly confused when asked certain things, he just doesnt have any conversation.

I am only visiting every other day now, as the travelling & then sitting for hours is taking its toll. Last week the day I didnt go in, I rung to ask how he was & a doctor came to the phone & said " your husband as weeks to live, would I consider a care home" to say I was stunned. Its been a bad enough shock as it is, but being told that over a telephone. 

My husband as no pain no cough looks well all hes being given is dexamethasone to reduce brain swelling.

I have asked for a second opinion & was told yesterday to either find a specialist myself or ask the Marsden. Hes been under the Marsden since diagnosis. So I messaged the Marsden last night to ask for a 2nd opinion & listed various treatments I have found online & Prof Mary O Brien my husbands lung consultant is calling today. 

So thats it, its a living hell & wouldnt wish this on anyone

Oh bless you. I am so sorry that you had such an awful telephone conversation with such an idiot of a doctor. They obviously are just wanting the bed that your husband is in, but my goodness some of these doctors have no empathy at all! 

Good luck with the call later today. One thing for sure you have fought every single corner for your husband. The only thing you must be reassured by is that he doesn’t seem to be in pain.