I shouldn't have to do this, but what do you think?

Not sure how to feel at the moment, so instead I'm going to write this post and see where it leads me. What do you think?

It's been a week since my Urology consultant told me #tedthetumour was a grade 2 semi-aggressive cancer tumour and my case was being referred to Oncology. Since then I've not heard a thing, nada, nothing, nowt. Is this usual? I don't know. Is it doing my head? Oh YES!

But life goes on.Today I had a consult with Mr Gallbladder doctor, to talk about removing it. I knew it was going to have to go at some point, because when I had the ultrasound on the 1st of February, the senior radiologist told me so. Maybe it wasn't her place to, but I think she was trying to take my mind off the fact they'd found ted on my right kidney at the same time (I still can't believe how lucky I was to have it found by chance)

But of course #tedthetumour took priority when we all started talking about surgery and the poor gallbladder took second stage ( but the forefront since surgery as I've had a couple of very painful attacks in the last 7 weeks) And although a private Urology consultant and my GP both agreed it made sense to take the gallbladder at the same time as my kidney, my NHS Urology consultant thought otherwise.

So here I was sat in the very nice consulting rooms talking to a very nice Mr Gallbladder doctor about the options. His next steps will be to speak to Mr Kidney Doctor as he conducted the last surgery to find out the lie of the land (or my abdomen in this case) and also to liase with Oncology about any treatments they may or may not have in the pipeline for me. He didn't want to compromise any planned cancer treatments as they take priority. All made sense.

But he can't do anything, we are left hanging.It's been a week, 7 whole days since I was told #tedthetumour was cancer but I still don't know what the next steps are. Oncology haven't contacted me.

I visited the MacMillan Cancer centre attached to my hospital, straight after the appointment to see what they thought, is this usual? It sounded wrong to me, but what do I know, I've not been through this before. I'm so glad I did. They work closely with Oncology (but of course) and they went off for a chat and discovered it hadn't even been referred yet. No wonder I hadn't been contacted.

They hadn't received the referral from Urology. What the hell? A whole week wasted.

How long would I have been waiting if I hadn't asked the questions?

I rang Urology and found out the letter, the next link in the chain of my recovery, was on a desk waiting to be sent. The medical secretary explained she was covering for someone on holiday, someone else was on maternity leave and the consultant she worked for was only just back after breaking his leg, which is why things had been delayed. It was being put in an envelope and addressed as we spoke.

Do you know what? I appreciate her honesty, but I just don't care. All I can think about is how long would that have been sat on a desk if I hadn't called. And why a bloody letter? What about e-mail? These are internal departments at the same hospital. Why are we relying on paper and snail or internal mail nowadays? This is the same department I posted about here which delayed my operation date. I'm starting to see a pattern.

So thinking about it maybe I shouldn't be surprised. Maybe its my fault for expecting too much. For expecting empathy and thought about how their actions affect people. Again I'm just a patient number.

As I said at the top of the post I didn't know how I felt but I've come to the following conclusions after writing, editing, deleting the swear words and rewriting ;

It would be very easy to be angry and annoyed. I can waste time and energy (energy I've got precious little of) ranting about it, looking at someone to blame. But it won't change what has happened. I need to look past this.

I need to highlight it to the trust, not to get anyone into trouble, but so they can look at improving their processes.

And be grateful I made the decision to speak up today, ask questions and chase. I will be doing more of it.

I shouldn't have to do this but what do you think?



  1. Darling Fay, I worked in a hospital for 10 years. Never assume anything and keep on asking. It's sad but true but you have to do it. Let them realise, albeit politely and respectfully, that you are a force to be reckoned with. You can complain in a way that is helpful and will help others. Do it; they need to join up thier systems. And good luck, with all of it. Jane

  2. "I need to highlight it to the trust, not to get anyone into trouble, but so they can look at improving their processes."
    Completely agree and although your cirmcumstances are different to mine I did exactly the same recently to my Mums hospital trust. Sadly I'm more angry that they haven't bothered to even get back to me within their agreed timescales than what actually happened to make me comment to them in the first place. BUT it is high time people were stopped being treated as a number and more as a person

  3. Fay,

    As you yourself know, the only way that something will change is if there is acceptance that it needs to change - and the first step on that journey is to recognise that there is something wrong. Which there is - quite obviously from the fact that you, THE PATIENT, had to intervene to get your case referred to somewhere to get further assessment, and treatment if required. I know you will put this across to the hospital in a constructive way, just as you approach everything else in life, and that they should then accept this and make sure that their processes, which have not worked satisfactorily are modified to do so. And then you can get the clarity and reassurance that you need to be able to deal with this as yet another challenge to be overcome. Good Luck. Adrian

  4. "And why a bloody letter? What about e-mail? These are internal departments at the same hospital."

    Playing devil's advocate...

    Boot up machine. Check e-mails. One hundred and twelve unread e-mails. Twenty minutes until next meeting so let's get cracking. Scan subject line and try to weed out the crap. There's one on birthday cakes, that's a priority. Damn it was yesterday and I missed it. Okay, here's seventeen with the same subject line ... the last one has all the other ones nested in it. Looks like some people have been playing e-mail "ping-pong" with the Reply button rather than just getting some face time together. What's this one about? Oh, team building. Delete. This one has a link to the latest edition of the online magazine. Delete. This one says someone has had a baby. Don't know them so delete. This one says the toilets are blocked. Delete. This one says it has an important attachment. Where's the attachment? The next e-mail apologises for not including the important attachment in the last e-mail. This next one looks important. Whoops, run out of time. Eighty three unread e-mails. They'll just have to wait...

    E-mail overload. If it's important I'd send a letter.