Well, now it's my turn to blog. I just have to get rid of these feelings somewhere!!
Markus went for a check up today, as they told us he should a couple of months ago. The first contact should have warned us - in fact, it did. The good woman at reception was expecting us, but wanted the transfer slip saying what examinations Markus should have. Well, we hadn't been given one. She didn't believe me and said so. Blood tests and gastroscopic ultrasound, I told her.
Blood test and ultrasound, she corrected me. M was not registered for a gastroscopy.
So, we waited, as you do, and the nurse took some blood. And we waited again.
Then the oncologist we saw last trotted by, to be waylaid by the receptionist. 'We have 3 different versions of the tests Mr H (Markus) should have' she said.
'We've got one on paper, one in the computer and now his wife tells me something else'.
Big Onc paused in his flight to say that a gastroscopic ultrasound would be good and this was arranged for next Monday at 7.45. Good, that at least.
The Onc mentioned a CT, but I only understood that it wasn't possible today.
X rays we had with us already, fresh this week. So now an ultrasound. And Mr Big Onc whisked away in a flurry of white coat
So we waited again.
Then Miss Little Onc ushered Markus into the ultrasound room and said 'Why are you here?' For our breakfasts, of course. If she doesn't know....
'I haven't read your file' she tells Markus merrily. Then she ultrasounds his stomach area. 'Didn't find anything' she says, gaily.
Nobody, but nobody, looks at his chest. He has cancer of the oesophagus, and an enlarged lymph node which has paralysed his vocal chord. He still has no voice.
Markus asks about having his PEG feeding tube removed. 'Oh, we like to leave them in' says Little Miss Onc. 'When your oesophagus is completely blocked we can't put it in again!'So she has registerd there's a tumour there. Not a tremendously sensitive way to deal with the situation.
'That's it' says Little Miss Onc and ushers us out.
'Here's your transfer for next Monday for the gastroscopy' says Receptionist
'Don't forget to come'
We start to walk out.
What about the scan? Is that all? I go back and say I don't feel very happy, I'm not sure that all the tests have been done.
'It's all perfectly clear'says the receptionist. 'Blood tests, ultrasound and lung x rays. Those are our tests here'.
I search out Little Miss Onc then, who says we can have a ct within a week if they think it's necessary.
We leave, thoughtfully and with a great feeling of insecurity again. Standard tests, maybe. But if your cancer is somewhere else?
Next Monday we'll see.
I have to say that this is not the UK, not the NHS.
FormerMember
This is crass behaviour, with lack of communication, and treating human beings like they are inanimate objects. I am so sorry that you are having to go through this, and that you have had new information delivered in a callous, insensitive manner. Yes, some medical staff seem to have skipped the "Patients, Communications with" lecture, and have forgotten - if they ever knew - that we are people just like them and their relatives.
Hope things improve now you have made it clear that you are not happy. Lots of love xxxx Penny
It's bad enough having had to worry about Markus's big day without all this added hassle. And isn't that false cheerfulness irritating ... it makes you just want to swing your handbag and connect with something solid. All the tests really will get done eventually, but in the meantime, I know you will both find the strength to hang on. And you know everyone here is thinking of you and sending love. Big hugs, Kate xxx
hi steffy just read your comment to pat and i just wanted to say my hubbys under addenbrookes he has had a bone marrow transplant well june 10th and we go to the encology clinic every friday. i wanted to say they are brilliant there i cant praise them enough, i know my hubbys in the best hands. pat if your reading this dont be palmed off if your not happy see if there is a support nurse if not try to get in touch with the consultant via secretary. hope this helps i lost my dad 9yrs ago due to a misdiagnosis at our local hosp and i wish i had kicked up more fuss at the time, so now i dont hold back if not satisfied as the support nurse told us at addenbrookes ring us 24/7 we work for you how true regards joolsbabexxxx pat ((hugs))
I can imagine how you're feeling Pat. My husband's only just been diagnosed but if we hadn't rung up & chased things I don't know when his biopsy would have been done as the hospital failed to make the appointment! Since then at least 3 docs & nurses have apologized & said it's always happening & blame it on the admin staff. At least we now know that happens & I will chase up everything from now on if I feel it's necessary. We've also been told that we can contact the cancer support nurse to chase things up.
The first people to complain to are the PALS office. Can't remember what it stands for this morning. Need more coffee!
There is one attached to each service, hospital or GP surgery. They can often get things sorted out if everything seems to be in a tangle.
Apparently, my surgeon and his team are in charge of my case, and they sent me for Oncology. The Nurse consultant is my best port of call for answers, but that doesn't stop me asking the Oncology Registrar for information about test results and what construction to put on them.
It is useful to have a sister who is a doctor, but also to be a member of the Patient Involvement Forum. We are in disarray at the moment, but when LINks start up in September we can swing into action again. If it is specific to your case, ask PALS, but if you think the lack of communication is widespread, come to the Patient involvement groups. We are active in transition and will carry forward issues to the LINks, but then we will be including Social Care issues.
There may be a Cancer group in your hospital. They seem to do the same as these boards.
Pusspins
Sorry to hijack you. I hope you are managing to get some answers from Markus' oncologist now. There is no number greater than one.
