It’s always a little concerning when Cancer Research Uk, lop 30% chance off the 5 year survival for your stage of cancer overnight. I emailed and asked them how and why. Here’s their reply.
Chin up girls!
So here’s the long version. I turned up at hospital with a long list. Written hastily on the back of an envelope. I joked that afterwards I’d leave it in a shopping trolley somewhere for someone to have a story to tell!
Here’s the list.
I saw Russ yesterday. I like him. He’s the guy that originally diagnosed me.
So we start at the top of the list. I have an ache in my left hip. It is an ache rather than a pain, and it goes down my leg and into my buttock. Like most things it could be nothing, it could be something.
I told him that I was scared the cancer had come back. If you know me in real life you know I don’t easily admit to being scared. But I am and thought it was about time I said so.
I carried on to my bladder. I have wet myself a few times recently. This always happens in the morning. It seems to be that the motion of going from laying to standing does something inside and I wet myself. During the day,during the night, no problems at all. The other day when I had a lying down nap, and the same thing happened when I stood up. Russ advised me to start self catherterising again to see if this helped. He said that he didn’t think my cancer had returned but would offer me a CT scan to hopefully put my mind at rest.
Next on the list perineum, anus and vagina. ‘I’ll hand those over to you!’ Back in the beloved chair. They have a new coloscope. It has a purer light apparently and is a snip at £8k.
It’s like an episode of the gadget show.
Usual drill, good old look see. Drenched in vinegar, open to the world!
Jane, bless her, says that everyone except Russ has been in the chair. She jokes that maybe he should have a go to see what it feels like. I suggest he should have a go while someone sticks a finger up his arse. Yes. My mouth was on babel mode.
My vagina (STOP changing it to cagina autocorrect.Is a cagina even a thing!!!) has an area of concern. He says he’ll biopsy it. I have to decide if I want local aneasthetic. I’ve had a vaginal biopsy done before and it hurts but it’s a short sharp pain and bearable. So I go for it.
‘Couple of coughs for me Julia’
Didn’t really feel anything. ‘
Have you done it?’
‘Yep, all done’
I look at Jane and say ‘he’s better at it than you’
Next up is my vulva. Us girls especially should know the differences between our vulvas (NOT vulcans!!) and our vaginas. Apparently my vulva looked ‘really good’ One for the bank.
Next the perianal area. More vinegar,but stingy ‘Ah this all looks good……ah, no, there’s a bit here’
He wants to biopsy it.
Tells me it will be far more painful than vaginal one. Do I want local? Injected into my arse? I ask him if he was having one would he just crack on?
Yes, he says.
I now know I should of qualified that answer with the question ‘and have you ever had it done???
Man. Excruciating searing pain as a bite of anus is snipped out if you.
My exclamation? My primal curse?
Where, oh where did that come from? Back in a week for results etc etc etc. And so it goes on.
Today I had an anal biopsy. It hurt. A lot. Afterwards my Mac nurse asked how it felt.
‘Like someone pinching a lump of your anus out with a pair of metal tweezers’
Which is uncanny as that is exactly what it entails.
I also had a vaginal biopsy. The smear test I had a couple of weeks ago was a complete waste of time it would appear. That showed mild precancerous changes however today I was told it looked severe changes, biopsy will show definitive result.
He thinks both anal and vaginal biopsies will show severe changes but does not think either will be Cancer.
CT scan booked because I’m convinced cervical cancer has spread. He’s happy to book a scan to hopefully put my mind at rest.
Back next week to discuss results and treatment options and meet my ‘arse guy’ because arses don’t come under gynea.
Thats the short version of events.
Phone call this morning from Mac nurse. Result is good news as far as they are concerned. No cancer found, just mild pre cancerous abnormalities. When you look at it like that I suppose it’s pretty good news!
Maybe offered some chemotherapy cream for it, will discuss further next week. Cream sounds pretty grim.
I have self diagnosed myself with Lichen Sclerocus. Yeah, yeah I know. I’m not a doctor. But all symptoms match and the cream they gave me last week is the treatment for it. So not a knee jerk Google reaction.
The thing is with LS is it can sometimes be confused with vulval cancer and also increases risk of vulval cancer. The only way to have a definitive diagnosis is for a biopsy.
No prizes for guessing what I’m having done next week! They will inject me with local anaesthetic and take a bit out to send to the labs. I’ve been warned it’ll be sore.
Its a little confusing as the perineum comes under the vulva for some things and under the anus for others. Not really sure if this matters in the great scheme of things!
Ok so today I got my vault smear results. I got them off the GP during a telephone call that had been scheduled for a while. Currently a 4 week wait to see ‘my’ GP.
She readily admits that she is not ‘up’ on VAIN. Why would she be? It’s pretty rare, and recurrence of it rarer. But she told me what I needed to know, which is that it is an abnormal result of mild dyskrosis.
As I think I’ve explained before, I can’t get cervical cancer again as I have no cervix! What I can get is a reoccurrence elsewhere in my body. These reoccurrences are pretty bad news. Recurrent cervical cancer has a pretty bad prognosis. Here’s something you might not know, cos I didn’t, if you say had…… ohhh which cancer shall we choose….cervical cancer and it spread to your bones this would be called recurrent cervical cancer not bone cancer. Anyway I digress.
You can get central recurrence or distant recurrence. Central is better news prognostically. This means it will return in your cervix (if you didn’t have it removed) your vagina, your vulva , your anus or your pelvis. Distant is bones, liver, lungs.
Cancer of the vagina, vulva, cervix and anus usually follows a linear pattern. You start with precancerous cells which change snd grow over time into invasive cancer
In in october of last year I had the highest grade of precancerous cells cut out of my vagina. This was followed by an all clear in February.
Today’s result shows I have the lowest grade of precancerous cells in my vagina. So it would appear that something is quite determined to set up home in my fanny.
So as my friend said ‘goodish, Badish news’
Back into hospital next week to discuss results and treatment plan.
And to have another look at my perineum. Nice day out!
I’ m still waiting for a reply from Cancer Resesrch Uk who I emailed last week asking how and why their website has slashed 25-30% off the stage 2, 5 year survival statistics.
Long long ago I started this blog as an outlet for me. Somewhere to write how I was feeling and get things off my chest. Recently I’ve been feeling great! This correlates with the number of recent posts. But today I’m feeling really miserable to I shall return to my little speck of the Internet and have a vent. I’ll feel better for it. You can skip it if you don’t like it!
Yesterday I had my 3 monthly check up. These check ups are anxiety inducing and from the minute you get the letter your mind is focused on the date.
There’s the preparation for it too. My self respect means I put as much grooming into a follow up appointment as a hot date. This in the circumstances adds to the absurdity of it.
So I made the journey to Bath. A gorgeous sunny day where there were plenty of other things I would of rather been doing.
Back to D3. Back to the room where you first waited before you were diagnosed, the same receptionist, whose Christmas earrings I will always remember on that very first visit.
Sitting in the waiting room. The waiting room is shared with the ultrasound department. Lots of happy couples waiting for their baby scans, beaming over tiny pictures of their tiny babies to be. Then there are the women, who you can tell are terrified. I just want to say to them ‘it will be ok, whatever happens it will be ok’ The weeping couple, the frail old lady, the accompanying toddlers, the men who nervously keep refilling their water cups as they have nothing better to do. Familiar faces of consultants you’ve seen before coming out to call patients in. The kind radiographer who held my hand through an MRI. They all go about their day while you sit there and wait. For 40 minutes.
I get called in by Jane. I have had email communication with her in the run up to this appointment as I have been experiencing menopausal symptoms and she assured me that Nick would talk through options at the appointment.
She walks me down the corridor to ‘that room’ the room where I’ve heard such good and bad news and sitting there is a doctor I’ve never seen before.
This really pisses me off. I know both my consultants are there because I’ve seen them. I’m sure this guy is lovely but he doesn’t know me or anything about me. He tells me he’s going to do a vault smear. I tell him to ‘crack on then’ he says he ‘likes my spirit’ and I tell him to ‘fill his boots’
I’m laying on the chair legs akimbo and they can’t find a bottle to put the specimen in. I’m fuming by this point. ‘While you’re fart arsing about I’ll shut my legs’
After a bit of faffing they find a bottle. I ask him if he’s new he says no he’s been there 3 years but doesn’t normally do clinics as he’s a fertility gynaecologist.
‘Good luck with me mate!’
Small talk is never my forte and especially not when someone’s jabbing an arrow headed brush up my fanny.
Get dressed, still fuming, but holding it together just. Am asked if I want to come back for my results, say ‘no, ring me with them’ Then mention a persistent itch that I have on my perineum. Without going bit huge details this symptom could be highly significant, just as it could be totally insignificant. Decides he wants another look, back undressed, back on the chair.
Tells the nurse ‘this bit looks strophic’ Er hello! That’s my fanny you are talking about how about telling me!!!
Writes a prescription for really strong steroid cream. Says they want to look at it again in a month.
Can’t get out of there quick enough.
Not the best experience I’ve ever had and I made them bloody cake.