What To Do, What To Do

Hi debs what an absolute nightmare for you. When did you have surgery? Having looked at their website the rating states requires improvement so maybe its not surprising. You are in a vulnerable position do you have a relative that could speak for you. Maybe ring pals or better still go into the office. It's the patient liaison office. If you've been allocated a cns cancer nurse specialist maybe try and contact her. Other ladies will be along soon with advice.

Hi Debs, I’m sorry this is happening! Here’s the info you need - you can complain right now! https://www.uhnm.nhs.uk/our-services/patient-experience-and-pals/

Had my Op yesterday was suppose to be second on the list but don’t know what happened, I just came on this unit at 2am. The anesthesiologist came this morning and told me it was bad, but no one has been to see me since. I’ve asked the nurses to try and ask an oncologist to come see me or my CSN but nothing. I give up honestly

Do you have a relative or friend to intervene on your behalf? 

Hi Debs

How are you feeling this am? I hope that you are not in too much discomfort.

This sounds really awful and I echo Marmitefans advice- contact Pals.

Are you due to go home today? Have you someone who can intervene on your behalf as you will naturally be feeling vulnerable straight after the op. 

Is there an office on the ward you are on that you could go and talk to the nurse in charge? I would even consider emailing the CNS and saying that you are currently in hospital and no one has been to see you and can they come this am. With email- there is then a paper trail and if they do not respond then keep that for Pals. 

I am so sorry you are having to cope with this when they should be looking after you. 

Jane

Hi All, thank you for all your messages. Still waiting to see surgeon or any of the oncology team which I have asked for again. I am due to go home today to a very nervous daughter. She has ASD and is terrified that I hurt myself or something going wrong. 

when you see information on what you can and can’t do, the nursing staff have just told me get on with it, for someone is not very mobile I’ve had to pull myself up out of bed and going to the loo on my own, still no pooping though. 

I have no idea what’s been taken out what’s been left in, or my prolapse, is that gone repaired, what ? So all I can do is wait. 

I can’t find an email address for my CSN which I would rather email as I hate talking on the phone, but like I said, she hasn’t even been to introduce herself.

im just still very confused

Hi Debs

From what I remember someone from the oncology team needs to discharge you so hopefully that would mean they will come and see you. They also need to complete discharge paperwork and give you information about what to do when you get home. Mine gave me leaflets and letters etc for doctor. 

I can understand you are worried about your daughter and hopefully once you are home that will reassure her a bit. She probably has all sorts going through her mind and once she sees you it should help.

I do think once you are home and feeling settled and a bit brighter then Pals is needed- if only to make them aware of how you have felt and for hopefully them to look at their policies and procedures etc. No one should have to feel this way after surgery. 

Bowels can take a few days to settle. From what I remember it was a couple of days for me and that is partly due to the anaesthetic slowing everything down. 

Hopefully today you will have some sort of discharge letter that will explain what has been done- the they should give you a chance to talk this through. If you don't get answers then once you are home and settled - you could contact your GP. They will normally be sent the discharge paperwork electronically. 

I understand you preferring to email your CNS rather than talk on the phone- a lot of people feel that way. There should be very clear contact details on any discharge paperwork today and if for some reason you don't get any- then if you go to the hospital website and then to the gynae oncology dept or ward- there should be something on there. Even if you have to email the ward clerk and ask for the direct contact details. However I was phoned once home by the CNS to check on me and I think that is done for most people and is one reason that you can be discharged so quickly. 

I hope you get some answers this am and am sorry you have had such a bad experience. Hopefully you will be home and feeling more settled in the next couple of hours.

Jane

Hi Debs, did you try contacting PALS? Their email address is Patientadvice.uhm@nhs.net    I’ve found my hospital PALS super and quick to respond. They WANT to know if things aren’t up to par so that they can have a chance to put it right. They can’t know if we don’t tell them! 

Thank you all so much, I feel much more supported through you all. The surgeon has just been and explained that everything has been taking away apart from did not take pelvic lymph nodes (which upset my daughter incase it spreads like my aunties did) I will get pain killers, laxative and “vegetarian” blood thinner injection. Which is really lovely that they contacted pharmacy after pharmacy to find the alternative for me. I suppose I will just have to wait to see what happens at discharge.

i will contact pals, but when I get home because I would be worried incase they came to me on the ward and I would be so embarrassed. I didn’t know if someone had read my message, a young male clean has been and done a really good job, especially around my bed  

im so grateful for having you all take the time to respond to me, it has really meant the world to me…thank you

That all sounds more positive. Communication is the key at times- I just wish in your case the surgeon had seen you earlier. Mine came to my bedside a couple of hours after I was awake. 

From my understanding they wouldn't take pelvic lymph nodes as a routine thing as it would be a risk vs benefit situation. The lymph nodes are there to do a job and unless it was shown on the pre op scans that there was potentially spread then they would likely just leave them alone. They will do some pathology now and hopefully in 2/3 weeks this will confirm your stage and grade and give some reassurance. 

Pals can be contacted at anytime and the most important thing now is you get home, settled and begin your recovery. Once home you can contact them. 

Well done to the young male cleaner- it really does help when you feel it is done properly. I wonder how stretched the ward is at the moment and wonder if that is partly why you have had such a rubbish experience. It's no excuse though- you are entitled to feel cared for or a clean ward to to be kept informed of what is happening. If staffing etc is a problem then maybe Pals will also be able to look into that. When you contact Pals you could mention the vegetarian blood thinner and the work of the young cleaner- so you are giving positive feedback as well as identifying the issues to them.

Hope that you are back home very soon and can put your feet up and relax. First thing I did was have a shower and hair wash, fresh comfy clothes and a cuppa. Makes the world of difference- the little things.

Jane