Looking for hope

I just wanted to send my love to you. I am sure there will be people on here who can help you specifically. X

Thank you, very kind of you. Just such a devastating thing seeing a loved one deteriorate so much in such a short space of time. 

Hi 

So sorry your Dad is going through this .It is indeed truly awful witnessing the deterioration of a loved one .Your  feelings of helplessness and frustration are justifiable.

My husband’s case was different from your Dad’s .His was stage 2 and operable .However his symptoms prior to diagnosis were severe for several months and I too had to keep pushing for nutritional assistance for him.I’ve never understood why this was the case .There just didn’t seem to be any urgency at that time , even though he was deteriorating at a rapid pace on a daily basis  .I eventually had him moved to another hospital where he received nutritional assistance almost immediately .

Obviously different circumstances require different methods of approach , but keep pushing his medical team for answers and hopefully a solution . ( if it means chasing a consultant down a hospital corridor as I did , then so be it ! ) We really do have to fight for our loved ones at times like this .

Sorry I can’t be more uplifting and I have no words that will make your situation any better but I just wanted to encourage you to keep fighting for your Dad .

Sending hope and strength at this difficult time .

J x

Thank you. I appreciate you taking the time to reply. I hope your husband is doing well. Maybe a different hospital would be better for dad. 

 It does feel like there’s a missing piece of care for him which is nutrition. They prescribe the fortisips but no real dietary advice or meal plan suggestions, no offer of proper support for his nutrition which has left him in such a poor condition. No acknowledgement of the stent issues further causing nutritional problems for him. It’s felt swept under the carpet & dismissed. It doesn’t feel like they’re in the business of saving life, more supporting the saving of money & doing the minimum x

Does your Dad have a dietitian ? ( My husband had one as part of his medical team ) If he does I would advise contacting then asap emphasising your Dad’s struggles and your concerns about his declining health .

I would also get in touch with PALS at the hospital who is treating your Dad and raise your concerns about the inadequate care for your Dad .

Of course this is all very difficult whilst you’re also dealing with your Dad’s illness .I remember it being very draining .Try to keep your emotions under control and be direct and assertive .
Remember you have a right to question everything .and from what you’ve said I would be questioning every single medical decision that is being currently made.

Incidentally I was actually told a year later at a meeting I’d requested with the heads of the departments we dealt with at that time , that my husband wouldn’t be here today without my intervention .and they could’ve handled it better ! 
I honestly couldn’t believe what I was hearing ! 

So in my view even if the outcome had been different (and who knows what the future may bring for us all  )  I would’ve been able to live knowing that I’d done my best for him at that time . 

I sincerely hope the situation improves soon . 

Stay strong ! Keep pushing ! 

J x

Thank you JPM, I did wonder if it’s a good time to speak to PALS. 
Dad does have a dietician & they’ve been quite hands off. I’ll approach them again for him. It really is draining, you’re right, the illness alone but to have all the extra with getting what he needs. The issues along the way & the journey so far being full of bumps. 
Your husband is lucky to have you fighting his corner. What an admission later on though that things could have been better. I’m so glad you were able to turn things around through your love & persistency xx

I can relate with you. I have been constantly fighting for my husbands care. 

Please see my postings under Postponed treatment.

I’m so sorry, your experiences sound very similar.

It’s so frustrating when all you want is the best possible outcomes to be supported. It shouldn’t come down to the need to fight a corner. X

So sorry you're going through this. My Dad has stage 3 squamous cell, it's so hard to see them like this. It feels like after diagnosis, things happen so fast. I agree that it seems like they need him to be strong for treatment, however clearly the stent isn't doing that. In my Dad's case, I ended up calling his team and saying "listen, he is having about 300 calories a day and has to undergo chemo. This isn't sustainable." His doctor agreed and they did a feeding tube. He now gets 1770 calories a day and he said "it kept me alive" through chemo and radiation when he literally couldn't swallow water. He still is reliant on it for most calories but can have some things by mouth. You have to be his advocate and trust your gut when it comes to these thing! If I didn't call his team, he would have faded before treatment started.

Aisdono, I’m glad they did that for your dad. How are people expected to survive without proper nutrition & this has been dads issue from the start.

We were told they don’t like to use the feeding tubes (which feels like a cop out when hearing stories like yours). It feels like they’ve sent dad down a path to dying quite honestly.

Im going to pop an email into PALS this evening to see if we can somehow get a review of dad’s condition by someone else whilst we wait for the other consultation.

Sending positive wishes to you, your dad & family.