The cat was the final straw.

Oh Lass, I'm so sorry to hear this, what a bloody nightmare!

Thinking of you and hoping you'll get somewhere today. Sending love and hugs. Will get in touch with Gragon and Flowerlady once I'm back on my feet, and will come and see you. xx

Home. Been crying since i saw the Dr, which is so unlike me. I'm just so tired and drained. 

Some quotes from the Dr..... 

"Swelling? What swelling?" - it would seem no Dr I've seen has mentioned the swelling despite me telling every one of them and pointing out the difference in each side of me. 

"We'll get you a CT scan sometime in the next two weeks, but nothing will have grown in the last 6 months"

"Your ultrasound was normal, so I don't think we'll find a cause for the pain. Have you enough pain killers?"

Then I was summarily dismissed and told to go home. I was far too stunned, exhausted, and sore to be able to even think of arguing with and questioning him.

So now I'm home, and apparently I'm to live with nausea and a swollen, uncomfortable, and painful stomach forever.

What a wonderful new normal. 

Lass

Xx

Hi Lass

Not in the least helpful I'm afraid but WHAT THE ACTUAL F@@K??? No,  no, no and no.

As soon as you have the emotional strength for it start phoning people and shout at them, or better yet find someone who will do it for you.

Hugs xx

Hi Lass, Well, I've just seen this thread for the first time and started reading it from the beginning about your cats! Is there no one you could ask to help with them when you don't feel well? Then the story unfolded about your hospital stay, butcher nurses etc Oh I have a terrible time with veins but now I don't stand for any nonsense, my rule is "3 shots & you are done"! I never give them a 4th chance as I think if they can't get blood with three shots, they won't get it with 30 shots because they are so flustered! Now when you went into hospital at 3 why did it take them so long to give you an X-ray? Do they tell you what the hold up is? Like someone else (sorry can't remember who) said, you need to get someone to get on the phone for you and get things sorted out, it's obvious you are not strong enough at the moment to handle things on your own but someone needs to Kick***!! So have you had an MRI scan yet or do they expect you to wait another fortnight?? It's ridiculous! I wish there was something I could do to help, I'll keep you in my thoughts and surely things have GOT to get better soon. If we had to start writing a book about what goes on, people would say it was unbelievable as it's too far fetched!!! I take prunes every morning to help with constipation and also take rhubarb. It works sometimes but it can get so painful!

Gragon, Tinalay and Flowerlady I hope you will all be on the mend soon!  

How are you this morning, Lass? 

Xx

Hey kirky, 

Totally my thoughts as well. 

Hey Annette, 

Sadly not. All my family live elsewhere in the country, and most of the supposed friends I had vanished once I got sick. I'm the wrong age to be sick, so my peers are too busy building families and careers to be able to accommodate a sick person. Then the friends who have stuck around, live on the opposite side of town. So not easy to just pop in when it's a 30 min drive. 

The Surgical Assessment Unit is terrible. It is solely manned by on call Dr's, then a team of some sort of volunteers who do bloods, cannulas, and blood pressures, and a team of nurses who do meds and chat.... So the Dr's are always running off to other areas of the hospital, and the folks in SAU just have to sit and wait for them to get back and have time to see you.

So I got there at 3:30, saw a Dr for the first time at 6:30. He said he needed to read my 'rather large file', then he'd talk to a Gastro Dr who had seen me the last time I was in, then he'd get back to me. He also said he'd arrange some pain meds for me. I never saw him again, then the shift changed at 8:30 and he and the Gastro went home.

At 9pm I saw a surgeon, complained last Dr had never come back to me, complained I'd never got meds despite chasing nurses twice. Second one told me they'd not even been prescribed so she'd need to find a Dr to do that. Oh, and HR was at 176 because I'd not had my daily meds, I was hot, stressed, tired, and hungry. So she got me meds, and a sandwich, said she wanted Xrays, but didn't want me walking down as my HR was so high so would arrange for a porter. 

Saw another pair of surgical Dr's at 9:40 who did exactly the same as the last Dr. Only he decided it was gallstones and I needed an ultrasound. I pointed out I was waiting for an xray already, he had no note of this. So said he'd arrange an xray, we'd see what that said, then have an ultrasound.

At 10 I asked a nurse where the porter was and if he was coming, she had it on the board I was just going to walk down. So then arranged a porter. I was back up on SAU at about 11 or 11:15 ish. And it took them until just before 1am to look at them, see all was fine, and send me home to go back for an ultrasound yesterday.

The Dr yesterday expected me to wait 2 weeks for a scan, but I just broke down and said that I couldn't. I've already had this pain and swelling for 4 weeks, I couldn't do another 2 just waiting for a scan. I needed it done in 2 days. So he said he'd request it, but that was usually only reserved for inpatients. So it might not happen.

Just had a call while writing this, asking me to come in for an ultrasound. Asked if they were looking at a different part of me, as I'd been in yesterday for an ultrasound and thought I was waiting for a CT or MRI. She put me on hold for a couple of mins then came back to me saying it was a CT, not an ultrasound. As you say, you couldn't make this shit up! 

So I've to go up to the SAU again to get a cannula in. Then I've to go and get the CT scan. Then I've to go and sit and wait in SAU again for who knows how long this time. 

So daloni, in regards to how I feel, I think numb is the best word. Lol. So many ups and downs, so little proper sleep, lots of pain and discomfort, and lots of unanswered questions. The biggest one being wtf is going on in my abdomen?!

Lass

Xx

Oh Lass, that is a horrible way to treat someone. I agree with you being the wrong age for illness. I was when I was first diagnosed 24 years ago. It’s not just that people are busy, they’re have no experience of people their age being ill and don’t know how to deal with it. My thoughts are with you and I hope you get some answers soon. Jx

I’m at a complete loss for words. When did it be come necessary to take an advocate to your hospital appointments? Isn’t that the job of your medical team?

You’re in an impossible position made worse by being so very debilitated by distressing symptoms and pain.

I would ring PALS and start a paper trail of these problems with them.

Ask you Oncologist for a second opinion. 

Ask for your case to be discussed at the next MDT meeting.

’Nothing will have grown in 6 months’ !!!! Ask to have that in writing, many of us can blow that statement out of the water.

The trouble is not only should you NOT have to fight your own corner like this, you’re in no fit state to. 

Ring the MacMillan helpline and see if they can suggest anything.

Hang in there Lass, this can not be your new normal.  Love & hugs xx

Oh Lass that's awful and I'm lost for words! Totally not acceptable!

How are you feeling today? 

I'm hoping something can be sorted out for you xx

Oh Lass, I am at a loss for words at your treatment too, you may just have to find a hidden reserve and stamp your feet and shout till someone hears you. 

i went to our asessment unit a few weeks ago with pain in my right side, i dont go to the gp or hospital unless its neccesary and when i got there and the sister noticed i had been crying she put her hand on my shoulder n said oh Lynn you dont look good. I said that i had not slept for 3 days and the fact that i was there meant that i had got to the end of my pain threshold n couldnt stand it any more.. They sent me for an x ray then They filled me full of painkiller and i promptly fell asleep on the trolley, I was woken by a supposed consultant who was a complete n utter P***K . He examined me and asked if i was sure the pain was on my right side as the x ray showed my bowel was full on the left but not on the right.!! I replied that at my age i am sure to know exactly where my pain was coming from and did he think my colon was inflamed again as i had had the same pain previously and they said that that was what it was, His reply was "dont be stupid " I never heard the rest as i was furious at being spoken to like i was an idiot and just said could he write me a prescription for whatever they had given me earlier and i would get off home and not waste any more of his time !!!  the nurse was so mad on my behalf but i told her in a very loud voice not to worry and that after i raised a complaint about the said doctor maybe they would retrain him in using some bedside manner. 

I really hope you get an answer and some relief from your  pain and soon. Lynn 2.