Caring for my husband

Hi Teatowel , so sorry to read your story.  That is a very sudden onset by the sound of it and I can’t imagine how you are both dealing with things.  I presume that your husband is now on HT and hope that this manages to reduce the cancer so that the spinal cord is eased.  I was wondering if there a reason why he is still hospitalised rather than being transferred home?  Try and keep positive, you are doing incredibly well.  Best wishes, David

I have no idea why he is still in hospital. The ward staff say the plan is to continue with physio therapy to assess his base line function, and discharge home with a care package in place. The ambulance service visited our home yesterday to check out access to move him home. No one from OT has contacted us to arrange a visit home to see what adaptations will be needed. Basically an air bed, hoist and carers is what we need. Oh and a wheel chair. 
The hospital ward is having seriously bad levels of staff sickness, often only one health care worker and the Matrons are covering nursing staff shifts. We have expressed our concerns and been told to write to the Chief Executive Officer. My husband was left laying in his poop for hours today, then management decided the bay he was in needed to be reallocated to a female ward so he has been moved into what is a cupboard space while they clean a room to move him to. This is outrageous treatment of a human being who is seriously ill. 

Hello, I was very sad for you and your husband, it’s a hard thing to deal with and you are right you have to stay strong for him. You also need to care for yourself. My husband also has had this news last week, his spinal cord isn’t affected, it’s his right hip and ribs, he is very shocked and very sad, it’s hard to keep his spirits up, but I try.

senfing you a big hug and empathy.

Hi Teatowel , much as I love the NHS, sadly there are areas of complete failure.  It seems everyone wants your husband to be at home but it is incapable of managing this fairly simple operation.  Have you talked to your PALS team at the hospital?  You can just imagine that someone at the hospital is searching for a free bed as we speak.  My heart goes out to you and I hope you get a resolution soon.  David

I have been in contact with Pals team and senior management. I was advised to write to the chief executive officer….I don’t have much confidence that anything will improve for my husband or other patients. I have also contacted the MP for the area where the hospital is located and been advised I have to contact my local MP. He is only interested in photo opportunities so again not much chance of any support from him! 

Hello Teatowel 

My MP was just the same:

Teatowel said:

my local MP. He is only interested in photo opportunities

however once his team in the back office knew all the details they sorted my issues out within hours and the MP took the credit.

Keep trying - you will get there.

Do give our Support Line a call on 0808 808 00 00 (8am to 8pm 7 days a week). They may be able to help push things along.

Best wishes - Brian.

Best wishes hope you get some happiness back together

Thank you Markcr, wishing you much happiness 

I have just read your message , and my thoughts go out to both of you. I am so sorry your husband's cancer has gone into his bones.

The NHS is sadly on its knees, I know this more than most, as I am a retired NHS nurse who worked in the NHS for twenty years.I have seen how it's changed over the years, and sadly, not for the best. When I started, in 1996, I worked on a Urology ward, care was exceptional, time was spent talking, and caring for patients, we had a good amount of staff, which were able to have time to deliver quality care.

Breakfasts, at that time was a choice of cooked, bacon, tomatoes, egg, toast, one day, and sausage instead of bacon the next. Cereal, and then toast. Now, it's basic cereal and toast, not great nutrition! All meals were cooked onsite, in the kitchens, fresh, wholesome and tasty, on Fridays, fish was on the menu, fresh, and battered and real chips! . Around 2000, it was decided to finish cooking onsite, and bring in pre cooked frozen food, which has to be reheated, not great. I know food is only one small part of care in the NHS, but, it matters so much, the nutritional aspect,  eating, and choosing tasty meals when your appetite is low.

This is just one aspect of the changes in the NHS, and sadly,  patients suffer, as you well know.

My husband has had prostate cancer, he had his prostate removed eight weeks ago, he had a phone call from a consultant last week to tell him the news that the margins around the prostate were clear, and no evidence of spread thankfully.

His care at the hospital wasn't great, he was told he had cancer by a doctor, who then gave him a Macmillan book, and asked us to " go and sit the waiting area and have a read about it, and decide what you want to do". We were called back in about fifteen minutes later, and he was asked " have you decided?" My husband said he wanted to go home and think about it, which was the best thing to do. He called the hospital a few days later to tell them he would have his prostate removed. 

I hope you will be able to bring your husband home very soon. You will need help,  Hopefully , the hospital social worker, and occupational therapist will organise this soon, once he is home,  you can spend quality time together.

Take care, both of you. 

This sounds truly horrible, and I am so sorry for you.

It's a mess, and I can't really suggest anything you haven't done.

There is one area where I am a little curious. Was your husband's cancer discovered when they were looking for causes for back pain?

Some of the symptoms you mention in your replies sound like things I have been warned to look for in my own back problems, although, in my case, they are not connected with my prostate cancer.

It did occur to me to wonder whether two tings were coming together to cause your husband's problems.