Awake and up all night

I was talking to a friend who is a doctor recently. I said to him that I didn't think I was coping and did he have any idea about how to. He said many patients asked him that and he always said that even you think you aren't, you are. There wasn't a measuring stick to match yourself to. So I suppose all the anxiety, stress panic exhaustion is just what we cope with on a daily basis and you are all rocking it.

Hi Dingg  

The only care OH got at home after discharge was every Sunday, by whichever district nurse visited. This was only a brief call to oversee the balloon in his RIG feeding tube, so for any other issues I either contacted his CNS or the GP. I got him off to A&E for anything I deemed more urgent. Ask for phone numbers you'll need before hubby's discharge and put them in your phone, as that'll save time should you need them.

As far as PIP goes, I got made OH's official appointee by the DWP, once I'd made it crystal clear there was no way he could speak on the phone to them. All communication from them is addressed to me and I deal with everything on his behalf. There was some awkwardness from them to overcome, but I'm pushy and got the result he deserved, although it took eight months. A lot of reforms have been introduced though, so hopefully it will be easier for yourselves.

Good luck sweetheart, and fingers crossed you'll get something sorted out soon xxx

Some wonderful hailstones earlier.

i’ve been pretty wiped out since hospital outing yesterday….everything hurting a lot more due to pressure from sitting in uncomfortable positions for too long and wound area being scrunched up.  I had to go back to strong pain killers to sleep last night and everything today is knocking me out.  So a reality check on how my recovery is going….

.my response preps were wasted, though,  as I didn’t prepare for the in between result!.  They hadn’t been able to biopsy this side because it was too deep….the analysis showed it was cancerous, so obviously it had needed to be cut out.  But it was apparently at the top of the lobe and touching the fissure between the 2 lobes, so it may have transferred some cells, but they can’t tell yet…..

They obvs don’t want to treat more unless they’re sure it’s needed, so they want to do another CT after 6 weeks, before they can know whether I need any further treatment. So yet another episode of wait and see.  I have the f/u appt thru for the ends of june.

The biggest panic I have at the moment is trusting the doctors. Prior to all this i have been let down by a gynaecologist at Burton and need to do a complaint about his behaviour but then all this hit.

I was sent back to Birmingham Trust which includes Solihull and Good Hope for the cancer stuff and that has been one problem after another. My surgeon gave me a mystery heart condition in a follow up letter which took me over a week to find out was somebody else's condition and get an apology letter. 

Then the oncologist not giving me time to take on board the treatment plan and having me sign the consent forms on the day so she could sort the drugs out with the pharmacy.

Just had a call from the hospital pharmacy to say they were supposed to give me 5 of these injections and could I go collect them. I said no as I'm not local so now my parents are going and I'll have to get them tomorrow morning before travelling to the other hospital to have them injected. The pharmacist said he emailed the consultant to query the missing injections at 9am on 11th which was 2 hours before my chemo and she only got back to him this afternoon.

I'm determined to do a PALS complaint now. There have been so many problems and I tick along quite nicely until they ring!

Sorry for the rant! It's just so frustrating 

Xxx

Rie. The doctor told my wife that the swelling on her shoulder was a rotator cuff injury and that's why she was in so much pain. Even referring her to a physiotherapist to do exercises. Eventually a nurse took a photo and sent it to a colleague who said she needed to get a scan. 6 months later and we got the devestating news that it was lung cancer and it had spread to her brain. 

Totally get your frustration. My wife could have had months without pain.

I was beyond anger and totally floored m

Ukiboy, It's shocking! I am so sorry for your experience. It's unforgivable.

It's like the humanity goes out of the doctors.

At the end of all this I will cataloguing the whole thing for a letter to my MP. I'm so tired of not being listened to and given wrong information. Whether that will do any good or not I don't know.

They seem to just accept it as well 'It's the NHS' amongst the staff. 

Sending you hugs xx

Sorry to hear that you have been given the runaround by the hospital. Just what you don't need at 'the moment.  No need to apologise for the rant, it's good to get things off your chest. xxx

Good afternoon Rose  

Lovely hearing from you doll. Yes, it's sort of between good news/ wait and see, so in limbo for now. It's awful though, about you being in pain and I really hope that can be brought under control sweetheart.

As long as you're reasonably comfy, and you've got your little cat for company, then hopefully you'll be able to rest and recuperate as much as possible.

Still no hailstones here Rose - what happened to the mantra, It's grim up north? 

Sending you big hugs, love, and wishing you the very best my lovely xxx

Thank you Daisy53,

It's just exhausting with them. Just chased up my waterproof picc line cover with my actual pharmacist which was sent into GP on  Monday and no record of that being recieved. Another thing gone missing