Part 3: Some observations about my hospital stay - not in any particular order

[BellmoreBelle]

A couple of us have already eluded to the lack of joined-up-ness of the whole thing.

And the lack of detail where it would really help - like specific exercises to strengthen core muscle groups. "Gentle exercise" prior to surgery, was all I was told, a woman who regularly strides long distances every day. Did that mean I had to tone myself DOWN before admission? There seemed to be no attempt to tailor the advice.

At least this time I didn't have a huge number of Macillian recipe books dropped in my lap at the pre-op, like last time - given to a woman who rarely cooks anything from scratch - i.e. can't and doesn't (want to) cook? Once again, it's about an activity/capability presumed vital to a woman. I was intimidated enough by the pictures...

I would have prefered a guide to the whole pre-op sequence - each of the stations you'll be visiting, and what those consultations are for. Yes, another workflow! A simple one page guide to your "4 hours at the clinic".

The telly, touted in the guide to the ward, did not work, despite it being labelled in the booklet as the star attraction in the TV Room. Wisely, on the actual door, it said "Day Room". I went to retreat into there a couple of times late at night - it's dark and cool and the humidity is far less desicating than the main ward - only to find a nurse wrapped in bedlinen sleeping in there. I don't begrudge that at all - but don't they have their own space to sleep? That television also didn't work in 2016... has it ever been fixed in the meantime?

Those stifling radiators - they seemed to have been turned up full bore at the mains - massive monuments to classic Victorian engineering. They were so hot that you would undoubtedly sustain a burn if you accidently rested your hand on one. Late one night the nurses went around and manually wrestled all of the these monoliths down to an imperceptable heat level, but this reversed the whole airflow dynamic - we'd been able to have the windows open to admit the cold air from outside and it nicely balanced, but suddenly we had to close them all and the air was still and dry. I kept waking up with a raging dry throat. That was the night I decided I had to get home at any cost, I couldn't deal with another night like that.

So... back to our hypothetic ward resource booklet. It was I who was telling the other patients about Ovacome - not in a prescriptive way, just about how wonderful the forum is, for example, to understand what the experience is like from OUR perspective, to understand what those trickily named treatment regimes might feel like in practice, what other women have been through and done, and so on. Why couldn't there be a whole source page of relevant links - all the charities, KnowledgeBases, and even links to the latest publicly-released research. This may be way too much information for some, but many people, and their friends and families, may well want to do their own research. Steer them away from public search engines (and all of that dangerous false information), and give them the good stuff. I'm a scientist, I thrive on that. And yes, this mighty tome should have an online presence, from which the written form is downloaded only at the time it is needed, to ensure the very freshest cut of information. Include more general references - diet, exercise, Macmillan, links to employment-related resources, everything.

There was an "anonymous" feedback form which I agreed to do; it was presented to me on an iPad encased in a childlike purple plastic case which made me feel ill to even think about touching it - it really didn't look clean. I personally abhor Apple technology, and I was handed this without even a rudimentary explanation as to how you invoke a keyboard on the screen. What were their focus groups like on this little gem? Most people have a good grasp of pen and paper, but you can bet many patients wouldn't have a clue how to play this toy. When I accidently exited during the first question and couldn't reinvoke the questionnaire, I gave up. I asked could they give a me a link/URL to an online version which which I could do using a real keyboard, and the nurse just shrugged. "There isn't one".

And that, my friends, is why you're reading this series of posts.

<more? I'm sure there will be>

[Madmolly]

BellmoreBelle where in heavens name are you

[BellmoreBelle in reply to Madmolly]

I'm at home, discharged from hospital, three days ago. This is the third instalment on my stay in hospital.

[Madmolly in reply to BellmoreBelle]

Which hospital and where

[Hidden]

I’m really sorry to hear your story. Frustrating. Demoralising. Sad when the patients are so vulnerable.

I have a few friends that work for the NHS. They are as frustrated and as saddened as we are.

There is no money.

Very few managers that will tackle the problem.

Terrible shortage of staff.

My stay at Churchill’s was very similar to yours. I couldn’t wait to get out. Facilities/food and staff was not what i thought it would be.

It’s an old system that cannot cope with the quantity of patients it now deals with.

Never the less I am so very grateful for the skill of the surgeon that probably saved my life.

The after care was great with a community nurse.

I fear ever having to go back to a stay in a hospital though and this saddens me as I know the vast majority of staff are over worked and underpaid and do their very best with what they are working with.

I do hope you make a good recovery at home. So much advice on this forum that I hope will benefit you. Xx

[Petrolhead]

And breathe.........

[Seasun36-uk]

Excellent Carol.

A simple card with some (reputable) websites would be great....at Clinic or in Hospital. Even just CRUK, Macmillan, OCA, Ovacome, TOC....

[Georgiatec]

Firstly I wish you a speedy recovery!

Your an absolute star! You need to write a book, it would be a best seller.

[BellmoreBelle in reply to Georgiatec]

Thank you! I spend a lot of my time writing, and I also find my style at any one time is heavily influenced by whichever author I am reading. It seems it was a wise choice to pack a couple of Monica Dicken's books to take to hospital...

[charlie12]

Hi Belle

So glad that you are back home. Sounds as if you had a rough ride, so sorry ..hugs

I work in a hospital ( not in the NHS) and when staff members of every grade are admitted, many many have difficult experiences. However, as an aside, American boards are full of people who face bankruptcy if they are not insured. The NHS is not perfect but it seems to me that it does a wonderful job. I am sure that the PALS officers or similar would be very very interested in talking to you and getting your observations.

We all have experienced one of the most dreaded , if not the most dreaded illnesses. This makes us very very vulnerable.

Take care of yourself xxxx

[BellmoreBelle in reply to charlie12]

Thank you so much for your comments, Charlie, my goal was to gather all my thoughts before I lost them, and I do want to talk them through at a level where I can hopefully help. I really, really, really do not fault any of the staff, it's the processes and procedures which let them down. xx

[charlie12 in reply to BellmoreBelle]

Belle, it is super obvious that you weren’t criticizing anybody at all. But this sort of information is very important for people about to have surgery and for people who are struggling with their experience of use of the HC system. We are all constantly reminded of the need to seat positive, which everybody would wholeheartedly agree won’t. So posts like yours make other ladies realise that not thinking that everything was fantastic is OK.

I hope you are beginning to feel better, such a massive operation you had to go through.

Love and hugs xxxx

[jools53]

Belle, did cf have any doubt about doing surgery! Second time! I’ve seen her and was told no not now! Very disappointed!xx

[BellmoreBelle]

She wasn't my chief surgeon. No doubt at all. They did a great job.