Sunday, 9 October 2016

CT Scan and beyond

As promised on post 'Day 4' here's what happened next .

The scan.

He went in the room. And was out again within 15 minutes! Painless.
He was told that the results would be discussed and then there'd be an appointment sent.

The wait.
Seemed endless. Mostly because it was. After a week and a day I rang up the hospital to see what was happening. I was told there was a backlog of CT scan reviews but I should hear in next few days. Then on Thursday 22nd  the letter plopped on the mat. The appointment was for Friday 23rd. I had to ring up. It was too short notice.

It was at that precise moment we kinda knew.
The woman on the phone hesitated ever so slightly and then rather guardedly said that did we know that 'they' needed to see him urgently?

Anyway, we could not do Friday and so it was set for Wednesday 28th September

I'm just going to do dates here.

26/06/16 - first blood in urine
08/07/16 - second sight, blood in urine
09/08/16 - GP appointment
25/08/16 - one stop urology clinic, mass detected by ultrasound
08/09/16 - CT scan
16/09/16 - I rang to see where letter was. Was told letter would be coming soon.
19/09/16 - rang again. The CT scan had been discussed on Friday 16th . These review meetings only happen on a Friday afternoon. A letter would be sent out. 
22/09/16 - letter arrived, rang up, sorta knew.
23/09/16 - scheduled appointment we cancelled
28/09/16 - appointment with consultant. Official Diagnosis Day
30/09/16 - letter stating it in stark black and white
30/09/16 - me on Google in free fall despondency. I've stopped this insanity now.

1. 15cm left renal tumour with para aortic lymph nodes on CT scan, indeterminate lung nodule.
2. Left loin discomfort suggestive of clot colic with visible blood in urine
3. Night sweats, possible para neoplastic syndrome.

1. Listed for open left radical nephrectomy
2. Provisionally listed for 13/10/16

Then it goes on to basically go over what we were told in the consultation.

05/10/16 - pre op assessment  - bloods, egg, go through operation schedule - find out that op brought forward to Mon 10th October
06/10/16 - The surgeon himself rang at 9pm. The blood calcium levels are too high. Drink a
minimum of 3l of water before 10am tomorrow. Come to admissions for 10am for  repeat blood test.
07/10/16 - arrive on Admissions about 9.45am. Greeted by lovely nurse. Bloods taken and asked to wait for results as may need admitting for IV fluids and IV drugs to bring down levels. Apologies for wait but there ya go.
My dad had taken us and his cousin turned up with a relative and sitting listening to them reminisce passed the time. The results came back. Blood calcium still too high, had gone up in fact, so would be admitted. Wait for a bed.
2pm go to hospital restaurant for lunch. Back to waiting room.
4pm - my in laws arrived to sit with him, as I bobbed back home for hospital bag.
4.45pm - arrived back with bag, in laws left, Mr 19 arrives from work.
6pm - back to restaurant for tea. Delicious food by the way.
7pm - admissions ward closes so we taken to the acute surgical ward
7.45pm - allocated a bed and cannula for drip inserted.
8pm - Mr 19 and me went home leaving him behind.

08/09/16 - Wake up ( after zero quality sleep )to just me in our big bed stupidly early because the alarm went off. The alarm went off because it's on his side and he turns it off at the weekend. I never gave it a thought. Text him. He's had 4 bags of IV fluids, one lot of medication into his vein and he was drinking a lot. Also doing massive wees every hour, with output being measured. Visited at 2pm. His fellow wardees included a prisoner in the bed across, handcuffed to the bed and accompanied at all times with two officers, in hospital for something kidney related, in Prison for.... Not sure but he wasn't allowed to eat with metal knives or forks. In bed next to him is a nice looking chap who is addicted to heroin. On methodone in hospital, for a huge infected swelling needle site. Goes out for a fag every five minutes. An elderly gent who is as ill with the same thing as I was five years ago and a young man with a young family, diagnosis unknown to me! I visit in the afternoon with Mr 19, his Mum, his Dad and his partner. All knocking on a bit and a bit deaf. And a bit prone to plain speaking. Interesting. Noted - I'm not going with them again! Was just me, his sister n her hubby last night. A lot more civilised. 

09/10/16 - He's texted to say temperature up but the Op is going ahead tomorrow all being well. I'm going to see him in a couple of hours with fresh towels and pjs. That's as much as I know. 

Until the next post....


  1. Thanks for sharing - 'Going through the mill' is the phrase that comes to mind here. Sending loads and loads of love and prayers/vibes/whatever helps in your direction (well, the prayers are going 'up' but you know what I mean)
    J xxxxx

  2. Much love to you all Rachel. I did laugh at your account of hospital visiting time. Thankfully it sounds as if you have a lot of support surrounding you. I hope all goes well tomorrow and will be thinking of you both. X

  3. Oh sweetie, I'm caught up . . . devastated even though I don't know you. Will be thinking of you both tomorrow, take care and hope you can get some sleep tonight. xx

  4. Thinking of you both, tomorrow will be hard for you, your head will be in the hospital with HG,chin up you have loads of us rooting for you both.

  5. Sending you love. You do have a way with words!xxxPenny L

  6. Will be thinking of you all tomorrow.
    Stay strong lovely Rachel.
    Huge hugs-x-

  7. Rachel, I'm so glad he's in hospital and having the op sooner rather than later. I used to love visiting time when I was in - not my visitors so much but the ones visiting the other patients were most entertaining and it definitely brightened up an otherwise boring day. Fingers crossed for a successful outcome and an extra prayer for you all tonight. xx

  8. Hope all goes well today and that you get lots of hugs. I can't help my tears falling for you. I wish you well.

  9. I'm so glad they are onto it very quickly. My OH is back in with high temp, hope that your cancer thing is over quicker than ours as it will soon be a year since they started trying to find out what was wrong and 10 months since we knew it was nasty.
    (((BIG HUG)))

  10. Hope everything has gone well for you both today. At least lots is happening very quickly now so hopefuuly you will see some quick and good results. But drinking 3 litres of water in 12 hours??? I'd just have to move into the bathroom full time!! Helen xx

  11. Thinking of you. Hope yesterday went well {{hug}}