Life is too hard

[SpinalPain]

Hi all.

I have come here not sure why. My dear hubby is fighting for his life.

He has pancreatic cancer T4, Stage 4, N0, M1. Spread to liver, lungs and now ribs. He had a massive chemo dose that almost killed him. In hospital for 2 weeks then a DNR form was signed and now he is in a hospice.

The hospital was very bad. One Wednesday the ‘Trust’ ran out of OxyContin from midnight until their pharmacy got the order in at 3pm the next day. All who needed it was just ignored.

The DNR was given to be signed AFTER I had come home with no support around him. I was with him for 6 hours and spoke to that Dr on the ward then that Dr came in and spoke to us twice lastly shook my hubby’s hand and told us that he has finished the paperwork to send him to the hospice.

When I was 2 minutes from home my hubby rang me upset and alone with the Dr and DNR form.

The next day hubby was transferred to the hospice. The staff there are wonderful. I no longer come home carrying dread on my shoulders.

Well folk that us where we are at the moment and I am very tired. Saying goodnight to all who reads this.

[Artyhype]

I’m so sorry. I can’t believe they did that

[SpinalPain in reply to Artyhype]

Thank you for your reply. I cried my eyes out. I told the ward sister to keep that Dr away from me as I may punch him in the face! I am a peaceful person. But I was extremely hurt and angry by his cold actions.

I told the ward sister that I will be making a formal complaint.

Now isn’t the time as all of my energy is spent being by my beloved husbands side at the lively Hospice.

But soon they will feel my wrath.

I took photos of their filthy floor, overflowing commodes, videos of the broken machines beeping as low batteries, faulty mattress- alarm sounding off every 30 seconds all thru the night. Bottles filled with wee 2 at a time. Body fluids in bed and floor and my poor hubby putting up with this every day.

One long list of neglect

I am worn out and will chat more tomorrow .🙄😔 night night x

[poppystorey in reply to SpinalPain]

My heart goes out to you .I will pray for you and hubby .But now rest and know you are never alone. Poppy Storey

[Agora1]

You've come here because you need support as well as people who care

at this time. Get the rest you need dear friend. We are here for you because

we care. Goodnight dear xx

[SpinalPain in reply to Agora1]

Yes you’re right Agora1.

I have had a nice day with my hubby today at the hospice. With the fantastic help of the staff today my hubby was helped into their cool space age jacuzzi bath. It’s the first time in 3 weeks since he had a bath and he had a big smile on his face when the jets started to massage his weary body.

There were tons of bubbles with no bubblebath and he absolutely loved it.

I left him fresh as a daisy with fresh bedclothes on ready for his nap.

Thank you for your kind reply which resonated with me.

[Agora1 in reply to SpinalPain]

Now it's your turn to relax in a nice warm bath. Your husband is well

taken care of by the wonderful hospice staff. Hope you get in some

respite time. Sending you a gentle hug. xx

[DJB74]

Geenuinely here for you. I lost my Mom to Pancreatic cancer in 2009. She suffered for two months in 2 different hospitals without an official cancer diagnosis until about a week before she passed. This happened after gall bladder surgery. I also delivered medical equipment for 3 years and was involved with hospice all that time too. So if you need someone to listen. Im here to support you during these strenuous times

[SpinalPain in reply to DJB74]

Hi DJB74. Thank you for your kind words. I am sorry to hear that you lost your dear Mum to this dreadful disease. It truly is dreadful. I thought that I was losing my 51 yr old hubby when he first arrived at the Hospice (UK) through the kind acts of the staff and the 1 on 1 care he has rallied.

I no longer come back home carrying the heavy dread on my shoulders as I did every time I had to come home from Warrington Hospital.

He has a day of managing to eat followed by a couple of days when he just has a yogurt and a small dessert. Then back to managing a meal. The staff are trying to find a happy medium with his digestion with medication. But he is much better than 4/5 weeks ago. We think it was the massive dose of chemo that almost took him. He doesn’t want to go through that again as he knows it almost took his life.

We are taking each day as a gift.

Thank you for reaching back out to me. Your kind actions meant a lot to me. x

[DJB74 in reply to SpinalPain]

You are very welcome. I am so glad to hear things are moving in a positive direction

[SpinalPain in reply to DJB74]

Thank you. I am hoping to get my hubby in the hospice’ space age jacuzzi bath again today if his lovely male nurse is on duty. He loved the massaging effects of the jets on his body. The Hospice and staff truly are amazing and so very caring. x

[DJB74 in reply to SpinalPain]

Thats absolutely wonderful to hear

[Agora1 in reply to SpinalPain]

xx you're in my thoughts

[Kkimm]

Hi

I am so sorry to hear what you went through at the hospital. How wonderful your husband is now getting good care at the hospice.

Are you in the UK or the USA?

Terrible to hear how low standards have fallen.

Feel free to message me any time if it helps.

I do not have any particularly related experiences except supporting a dear friend who is also my next door neighbour through cancer treatment at present and that my mother who has now sadly died had some poor care in a UK hospital a couple of years ago which upset us all very much.

Sadly the health service is in crisis and although there are some very caring individuals often standards and morale can be very low.

My heart goes out to you and your husband.

My very best wishes.

Kim

[SpinalPain in reply to Kkimm]

Hi Kim. I am sorry to hear about you dear Mum who also sadly suffered in a UK Hospital. I was shocked by how stretched the nurses were. How basic care and diligence are not present in our UK hospitals. How the ‘trust’ can actually run out of ampules if Oxycodone and then not have another pain killer in it’s place for 15 hours. It’s so very wrong.

The Hospice has been heaven sent!

Many thanks for reaching out to me in my hour of need. Sandie x

[kenster1]

hi sorry to hear the news of your husbands illness.god bless him.

[SpinalPain]

Hi all, I now have my hubby back home with me. He is still very poorly and we have a bed in the lounge. I am finding it hard to sleep tonight. I am hoping that tomorrow will be a better day for us both to have more precious moments together.

Just thought I would let you all know where we are. Night night to you all x

[Agora1 in reply to SpinalPain]

Dearest Sandie, holding you in my thoughts and hoping for that

better day tomorrow for both you and your husband.

Goodnight sweet friend. xx

[SpinalPain in reply to Agora1]

Thank you Agora1. Good night God bless you. Sandie x

[SpinalPain]

Hi all,

I am just here to let some of my stress out. My dear husband sadly died on 8th May and life without him is so unbearable. I miss him every day and the nights are the worst. I hate every day 8 of the month. He went peacefully with me holding his hand. I have seen him twice since he died. Some folk may think that i am hallucinating but both visits were both with him smiling and looking so healthy. Those moments were lovely, but I guess that I am feeling at a loss without him here by my side especially in the evenings. I feel stuck, and life goes on for all others. He was such a strong, healthy man who never even got a cold, then from nowhere bam! I am left with questions about how this pancreatic cancer came from.

Is it genetic? then i worry that his daughter may get it later on in her lifetime. Was it from the hazardous chemicals that he transported? I feel that is more likely the cause.

His boss from work has left the depot, the main boss is silent and wont communicate with me, which leaves me with more suspicions. At one stage his big boss told me that he may have to consult with a solicitor, that was when i just asked for a copy of my husbands work contract! Then three months later when I asked again, he told me that there was a small fire in the office and the contracts were all lost.

I feel that sounds like a big cover up. Am I losing my mind?