My consultation tomorrow is looming but my appointment isn’t until 15:45. Thank goodness I will have a shopping delivery and my granddaughters to distract me while I wait …. no doubt for more Tales of The Unexpected.
So back to my discharge notes that didn’t say much except
Outpatient: 2/52 with consultant and histology.
Apart from that, the fact the surgeon mentioned the Chest CT was playing quite heavily on my mind as I guessed I would be having that before I saw the consultant. I guessed wrong.
Bear in mind that prior to my TURBT, the nurse had said once I had the op it would take 4-5 weeks for the results to come back, then they would have a team meeting on a Friday, to discuss the results, then I would be given an appointment to see the consultant.
I was quite relieved that I’d now been told it was just 2 weeks and assumed that was because my kidney wasn’t draining properly.
The first week came and went with no phone call or appointment for a CT scan so on the following Tuesday, 29th June I rang the nurse team. I explained everything to her and she said the surgeon should never have told me 2 weeks when it takes 4-5 weeks for the results to come back and for them to discuss next steps in their team meetings. She said she would email the consultant to check about the kidney drain situation and to see whether the scan had been ordered. She said she was off the next day but would ring me Thursday.
The Thursday was exactly 2 weeks since I had my TURBT and I patiently waited by the phone but no call came. She had told me previously that the team meetings are on a Friday and once the results came through, they’d discuss them at the meeting on the Friday and they would call Friday afternoon to arrange the consultation.
in a way this put my mind at rest, knowing that I wouldn’t have to wait by the phone anytime except Friday afternoon. As the nurse didn’t ring me back on the Thursday, I kind of anticipated a call on the Friday afternoon. The call didn’t come, so I’d just have to busy myself and wait for the following Friday.
However, on Wednesday 7th July, I got mail I knew straight away that one of the letters was from the hospital as I could see the horrible greyish coloured paper through the window envelope.
I opened it to find it was my consultant’s appointment for 22nd July at 15:45. Well, I wasn’t expecting that! That definitely wasn’t a Friday afternoon phone call but hey, I’d got a date.
I updated the WhatsApp group to let them know and while I was in the process of opening another letter that I received in the same post, my daughter rang.
I was half talking to Jen, discussing the surprise appointment letter and half reading the letter I’d just opened which I noted was from my GP surgery. It was just a standard letter that had had my name and NHS number added.
The first line caught my eye while we were talking ….
We are sorry to hear that you have been diagnosed with cancer.
I had to stop Jen mid flow to tell her what the letter said. It just went on to say here are some useful links to online support and we also provide district nurses blah blah blah.
Needless to say, I wasn’t expecting that! We were both gobsmacked to be honest but at the back of my mind I thought they might have sent the letter on the back of letters they’d received from the hospital, all of which I’d also been sent copies, which said ‘possible cancer’.
We chatted a bit longer and ended the conversation but that letter kept playing on my mind. Of all the low bowlers and shocks I had received in the last month, of all the processes and procedures I been told to expect, surely this isn’t how I find out I have cancer! This never happens on the TV even. I thought I’d been given the choice to have my daughter sat beside me in the consultant’s office when I heard the news and until that time there was always the dim hope that my lump was benign.
Jen phoned me a bit later to say she was so mad about the letter that she’d rung the surgery to complain. They were apologetic but couldn’t discuss it in detail obviously as she wasn’t me. I was so proud of her ringing on my behalf.
Then my son rang to see if I was OK as he was equally shocked that I heard the news that way. I must have a delayed shock system I think. But the more I thought about it the more outraged I became.
I rang the surgery myself. I had to get it off my chest and I feel so sorry for the poor lady that answered the phone. I wasn’t rude and I didn’t shout but I became increasingly upset. She was lovely. She disappeared for a while and said that a GP would ring me really soon. He did, about 15 minutes later and I felt sorry for him too. He was so lovely, understanding and so so apologetic.
He said they’d received a letter from the hospital dated Friday, 2nd July (the day I sat waiting for a call). He said it contained the histology results and mentioned that they hadn’t had a meeting to discuss them yet but he said the letter didn’t say I hadn’t been told.
What?! I said the letter is dated Friday 2nd, the letter I received from you is dated Tuesday 6th. Today is Wednesday 7th. At what point would they have had a chance to arrange a consultation to tell me in that time?! They have a strict policy not to ring people with news like that, particularly when they haven’t discussed treatment options yet!
I made him read the letter to me, he said but you won’t understand most of it because it’s in their terminology. I didn’t care about that. He said the results show TCC bladder cancer but no discussions had taken place regarding radical treatment yet. There was more but he was right, I didn’t understand so didn’t take it in. I asked if it mentioned the grade or stage and he assured me that it didn’t. I also asked for his assurance that he would never let this happen to anyone else. I said, even if I had known, the letter itself was so bland and there wasn’t even a point of contact on it. No phone number no name, nothing. He said he would call a team meeting after surgery that day and make clear that no one was to receive a letter until after their consultation. Hopefully they’ll review the actual letter too.
So all that happened over 2 weeks ago now and I still haven’t really got over it. They can’t take it back. They took away my few weeks of hope. They took away the only thing that I had control over and that was who was with me when I heard the news. What they gave me was 2 whole weeks of wondering how bad it is and what might options might be and all I can do is Google but everyone is so different and treatments are so different and I feel my head is fit to explode.
But this time tomorrow? What state will my head be in then?
