Biopsy – 14th Dec 2021

I am so pleased that biopsy day has arrived because it is a milestone towards getting some answers and a way forwards.   Clearly there was some apprehension though as I only got minimal sleep the night before. 

The NHS pre-procedure guidance is never decisive enough to allow for informed logistics management.  The booking letter just says “don’t drive afterwards if . . . . . “.    Shall I risk it (driving) or go for the safe option?

In the end I get dropped off.    I am still waiting in the corridor at the day unit reception an hour later.  After I reminded them of my presence someone comes to collect me.   But oh my god, what is this place?!  It is full of old and miserable people who all look proper poorly, still in their night clothes (it’s 9:30am or later).  I don’t like it, and immediately the empty corridor seems to be my friend.    

A nurse arrives to “check me in”.  The questions start:

Q: “Are you mobile, do you use a walking stick” A: You just showed me in?   (I’m 52 – why is she asking me questions appropriate for a geriatric?)

Q “Are you able to look after yourself?” A: “What?!  Are you for real?” 

I offer them all the filled in forms I was advised to bring along.  The booking letter said they are essential.  But they are just used to copy my personal details from one form to another. It’s all pen and paper.  I can’t help but feel sorry for our non-digital NHS and think of all the benefits end-to-end digital workflow and computing systems could bring to the front line and to users/patients/visitors. 

I get fed up the number of times I’m asked about how I am getting home and me telling them it’s a local anaesthetic and my husband is picking me up.   

I spend some time observing the goings-on.  There’s a lady wheeled in with beepers going off and out-for-the-count.    Another lady wheeled in with the most yellow face I have ever seen, also not conscious.   This is not a place full of fit and healthy people. 

They tell me I am booked in at 12:15.  I am determined not to play the vulnerable sick patient role so I wait as long as possible before undressing and putting on the gown they give me.   

But 12:15 arrives and I am still in this horrible place.  I’ve been waiting weeks for this appointment, which will bring me answers, and now I’m overdue my slot!   

Eventually they bring me a trolley to wheel me along to my destiny – or so they thought.  I tell them (really nicely) I’ll walk.   We then have a conversation about the difference between pre-procedure transport (I walk) and post-procedure transport (trolley).  “I am capable of walking there.  I am not ill”, I tell them.     We make our way to the CT scan room, them pushing the trolley and me padding along behind, in my socks and gown.   WIN.  It’s not next door and it’s not a short walk either. 

I wait outside for about 5 -10 mins idressed in just a gown, pants & socks.  I feel a tad exposed and inappropriately dressed for a public corridor outside radiology, albeit if it is a hospital. I am quite cold (I have no central heating right now).  The only positive is that I am waiting for a procedure that will bring clarity to my situation and guide the way forwards.  Every minute spent outside Radiology is a step closer to leaving and being at home.   I must look pathetic too, because a member of staff (I recognise her from my previous CT scan) walks by, stops and asks if she can get me a blanket. 

In I go! Everyone is there, waiting.  I learn that the student is doing it.  I don’t care.    I also learn that they are going to do a head scan whilst I am in their detention.  WHAT?  I am Not Happy because this was not advised in The Letter, neither have I been advised a Rationale for it.   I am booked in for kidney biopsy, that’s all.  This is just not cricket. 

[At my oncology appointment the following week I am advised that a head scan is standard practice following a referral.  They assume the radiologist knew this and decided to add it proactively to save me a return visit.  Fine, but he could have explained this to me at the time.]

Back to the biopsy.  I get the most bizarre, vivid and wooden instructions on what’s going to happen, from a doctor with zero people skills.  It’s so inappropriate and the pitch so wrong, I laugh.  My pause whilst reading the consent form prompts the doctor to point at each bullet point and read it to me, as if I am illiterate.  The disconnect is so marked that I laugh again.  Now is not the time for feedback so I sign the form and off we go.    The nurse breaks the awkward moment by tucking in surgical covers (I assume) into my pants (best ones) and jokes that the doctors are so messy.  I believe her.  I’m still freezing and I’m grateful for the blanket that voluntarily arrives. 

I am repeatedly told that they will check the needle position at various stages and I MUST NOT MOVE.  So much so, I am paralysed with fear that they’ll miss the tumour and the procedure will fail, because I moved.   I watch as the doctor gives a demo on the instrument to his student.  LOL

I have never been so motionless.  The wipe stuff is freezing, as warned.  The prick is uncomfortable going on sore, but doesn’t last long.  The local anaesthetic soon kicks in and I feel nothing more from then on.  I’m a tad worried that they only seemed to take one sample.  Google tells me they normally take two as an insurance policy (make sure they get a good sample).  But then google said they use ultrasound to guide the needle too and we’re in the (superior) CT room.  Once complete, I‘m stiff as I move off the scan bed onto the (previously rejected) trolley.    The doctors bid me farewell and wish me the best which I thought was a nice touch, especially as I laughed at the boss man. 

There’s a risk of bleeding after a kidney biopsy and I have to lie on my back for 4 hours afterwards.  Back in the horrible day unit, I check the time on the wall clock because I know it will be important later, so I can calculate my release time.  The benefits of sleeping little last night now come to fruition and a couple of hours pass by in a dozy state.   

I get my phone out and send some texts and browse twitter from my prone position.  The day unit has quietened down and is more amenable now.   I’m cold again so another blanket arrives. The yellow-faced lady is now sitting up and conversing with nurses.  I work out that I’m not getting out until 6pm.    I’ve not eaten anything since last night.  I have no appetite right now, so I am not particularly bothered!     By late afternoon I feel in desperate need of a cup of tea and feel a bit of food is appropriate too.     I remember that this is a DAY UNIT so I have to get evicted soon, right?! 

Eventually I’m allowed to move into a semi-reclining position.  A young girl arrives next to me with her own fleece blanket (clocked for future reference).  The unit is emptying big time and it looks and feels like it’s closing time.    Tea and toast arrives.  I am told to order my taxi (= tell my husband to leave now).  The cleaners have arrived.  They seem to be the busy ones.  I get dressed and someone arrives to let me out.  The doors are locked 24x7.  You can’t leave unless authorised by a special person with a Pass to open the door.

We have a final sting in the tail when hubby is not waiting outside the unit and the nurse asks me if the man waiting there is my husband.  He and I had already looked at each other with no recognition.    There is a last minute check about whether she is allowed to let me go, unattended.  I phone and direct hubby who is waiting at the bottom of the stairs.  We have the local /general anaesthetic discussion AGAIN and finally I am free. 

For the record, I would have been perfectly fine to drive myself home.   

I inspect the damage at home, later on.  There’s a really small and neat 2” square dressing.  My (best) pants show no adverse effect.  I have no pain or ill effects.  I don't get any of the side effects they warned me about eg blood in urine.  

I get the results at oncology the following week.  They hit the tumour YAY.  It’s a clear cell renal cell carcinoma (ccRCC), the most common type of kidney cancer, which is a good thing because it means more treatment options and trials are available.     

  • Finding your blog has been a god send thank you. My mother has just been diagnosed with cancer of the kidney with local invasion and possible spread to lung. She has her biopsy next week so being forearmed and forewarned about total alien processes and reading your upbeat and positive recording of your journey really is a help. So I just wanted to drop a line to say thank you and I wish you the very best and a healthy happy life. I will continue to follow your journey and cheer you on from the sidelines   Heart

  • Oh thank you so much.  This has really made my day.  It took me a long time to eventually decide to do this, and it was specifically for this community, for people experiencing similar, people like you. Thank you so much for your feedback.  

  • Honestly it’s so helpful. Biopsy next week and thanks to you we have some light shed on what we might expect, not to panic if head scans or 4 hour rests required.. and honestly seeing a glimmer of light for the road ahead. Baby steps though. Not going to get to ahead of myself.  Can’t thank you enough

  • Wishing your Mum all the best for next week.  Good luck and keep us updated.