It’s all about the living.

 

 

Aneathesia. Not 100% sure what happened but I made it to zero! Normally you are asked to count back from 10 and you don’t get past 7. For some reason I kept going, got to zero, and made it very clear I was still around. Not for long though, woke up for a short spell in recovery and then taken along to the ward.

I was incredibly lucky to have my own side room. If you’ve followed this blog from the start you’ll know about previous stays. To be in my own room was AMAZING. Peace, quiet and a tree outside the window.

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A friend came to visit on Friday morning, breaking the ‘no flower’ rule. So I even had some sweet smelling sweet peas to look at too.

Later, Tracie another one of the Macmillan nurses came to see me because Jane was off. She too was very happy I was in my own room.

‘You’ve got Hotel Charlotte this time’

‘Yes, instead of Mortuary Charlotte’

What she said next has absolutely stuck in my head.

‘Yes, because this is all about the living’

And that sums it up.

I’m not going to live forever. Nor are you. But life is really all about ‘the living’

However you wish that to be.

So I’m living, as best as I can, in as kind a way as I can, in the most worthwhile way I can, for as long as I can.

 

 

 

 

 

 

 

parklife Thursday 25th

I was given a midday admission for my op. So instead of staying overnight at a friends close to the hospital I decided to stay in my own bed and get the train in the morning. This worked well, having something to do to use the time between 7am (when I couldn’t eat) and arrival was far better for my psyche than just waiting around.

The train was heaving, full of pretty young things on their way to Reading festival. It made me remember my own trip there and the stories I have from it…..good times!

Opposite me was a lad probably about 25. Very agitated and clearly not on his way to Reading. I was picking up some very edgy vibes from him and when he declared he’d just been released from Portland jail, ‘I got 6 years but I did 3’ I felt like playing my conversation Trump card by declaring I was on my way to get my vagina removed.

I was overcome  by a feeling of life’s rich tapestry. Everyone with their own story to tell, to create, to live. Corners to turn, choices to take. I can’t explain it very well, but that journey was the best thing I could of done that morning.

Into the admission suite, 4th time now, and you recognise people. Its a little surreal. They had ‘smooth radio’ playing. There really is bugger all else to do than sit there and wait. You can’t nip out for a coffee, I certainly don’t have the concentration to read, there’s no wifi/4g, so you just have to sit.

3 songs that stood out. Don’t Worry – Bob Marley , Something inside so strong – Labi Siffre and You’re so vain – Carole King. The last makes me snort embarrassingly, and have to explain to a guy a few seats up that my op is to remove something called vain and I’m finding it all a bit bonkers. Poor bloke just nods, and goes back to his own head, waiting for his own op, dealing with his own shit.

The wait, which I think was about 3.5 hours is peppered with chats with various medics. Anaesthetist was same as my first big op. He reassures me that heart will not be an issue. I ask what will happen if I have a heart attack on the table, and he says ‘we’ll deal with it’. Nurse goes through the ticky list. ‘Any chance you could be pregnant?’ ‘No’ ‘Are you sure?’ ‘Yes I’ve had a radical hysterectomy’ ‘Well you can’t argue with that’ ‘No’. Very irritating. She was pretty kind though, discloses she’s had a mastectomy, I think to show a little solidarity. Gives me some drugs.

Jane and Nick come to talk to me, I tell them about how much the ‘young one’ had upset me the day before. They get it. They will pass on my feedback. I’ll add my own at a later date. They ask if I’m sure, I tell them I am, we talk about my reasoning for not having the reconstruction, they agree with my thinking. There’s not a lot else anyone can say.

finalky get called into room to change into gown. When that happens you know you are almost on your way. They can’t find my consent form, I assure them I signed it yesterday. They will need me to sign another but has to be in the presence of a doctor. I offer to take it down to theatre with me! Gets found right at back of file, get my stockings on and good to go.

 

 

 

 

Wednesday 23rd

I’m here and I’m alive. It’s Friday,  the day after my op, but as is my way, I need to keep this in order. This little blog has proved very useful to me the last few days got looking up dates etc. Like a mini version of my medical notes, very helpful.

Anyway, Wednesday.

Day starts off with dropping the boy off at the station and waving him goodbye as he sets off to spend some time with my mum. There is always the thought that crosses my mind ‘what if something goes wrong, what if it’s the last time I see him’ Big hugs, a flicker of tears in both our eyes.

Then drove to Bath. From my old house I could pretty much do it with my eyes closed. I still need to concentrate from the new house. My head was a sieve and made a couple of errors.

Get to pre op suite. Pre op nurse, was like Basil Fawlty, very competent but as eccentric as hell. Told him straight away about my SVT which led him to ‘flip’ his next patient and sort out getting all my notes from Gp sent over, arranging for me to have ecg etc etc. All the other usual gubbings, bloods, height/weight, swabs. Quick to write but this all took 2 hours.

Then I had to go downstairs to gynea. Not long after Nick calls me in,  Jane is there and another (very young) doctor observing. It was hideous. The ‘young one’ as I will call her, either appeared to find the whole concept of a woman losing her vagina rather challenging or a source of amusement because she kept giggling. She was sat behind Nick. Nick, I believe, sensing my mounting  irritation at her, moved his chair so he was directly in front of me, and I didn’t need to look at her over his shoulder. I saw Jane get eye contact with this ‘young one’ and while I can’t be sure I think the jist was telling her to shut the fuck up.

Horrible.

I was probably over sensitive ( it’s not every day you talk about having your vagina removed) but I could of throttled her. When I told a Nick everyone upstairs was getting their knickers in a twist about my SVT, she chipped in with ‘you’ll be fine’ She was very much getting on my  nerves, slouched on her chair, it was as if I was there for a splinter.

I then asked a question that I already kind of knew the answer to. As I no longer have a vagina, or very little else that comes under the heading of gynea. The likelihood is that if this precancer comes back it will either be on my anus or ureatha. This means that I will no longer have Nick as my consultant and surgeon. I’d worked that out, but asked it, and it was confirmed.

Other cancer buddies have explained that ending treatment, moving teams etc is like the end of a relationship. Well it is a relationship. These people have been a massive part of the hardest times if your life.

So upset by then, and very close to breaking down, I did a runner out of the meeting,  sat in the car, and bawled and bawled and bawled.

 

 

 

 

 

 

Last night…..

I got a phone call from Jane at about 6 o’clock. I’d sent an email in the morning confirming that I was decided to go for vaginectomy without construction and could she let me know dates when she knew.

She offered Thursday or if I couldn’t do that Monday 5th September. Bearing in mind next Monday is bank holiday, they are moving incredibly quickly. Which is great if a little….ok…..very unnerving. Nick did ask last Friday when I wanted it done and I replied ‘this afternoon’ so be careful what you wish for.

I managed to sort out everything in about an hour. Pressure suits me, waiting around worrying doesn’t.

I know tomorrow will be spent up at the hospital with pre op, I’m then staying overnight with a friend near there who will take me in Thursday morning. So today is the day for washing, tidying, changes beds, ready for recovery.

With this level of organisation you’d think I’d done this before….

 

 

 

 

 

 

 

 

Decision made

Following discussions with lots of wonderful people I’ve made my decision. Thanks to all the people who have input into the process.

Ive had my wallow, had my cry, had my sulk and girded my loins for the next stage.

Im going for the total vaginectomy without reconstruction.

My consultant, has told me that he can’t guarantee that if it turns to cancer it will be caught before it spreads. The place it is most  likely to spread to is my bladder. I don’t fancy that one bit. He also said that due to the pain examinations cause me, future ones would be done under general anaesthetic if I went for the watch and wait idea. Anaesthetics aren’t great for a body, so this is pretty significant. Mentally I don’t think I could cope with wondering if cancer was spreading in my body as I went through my day to day business . So   Option one discounted.

Option 2, of just taking a small amount away just doesn’t make sense to me. If that happened the likelihood is i’d be back right here before I knew it.

Option 3. All that’s left to make with this decision is whether I have reconstruction or not. Talking to people who have had reconstructions, people who haven’t and nurses who have talked to lots of people in the preceding camps, I’ve come to the conclusion it’s not for me.

It would massively add to surgery and recovery time. Tissue would be taken from my thigh and made into a tube to make a neovagina. It would have no sensation, no lubrication, and most importantly for me risk damaging the nerves of my clitoris. Which lets face it is where the fun is.

I have visions of a lump of thigh (apparently if your thigh is hairy, well, your vagina will be too) sitting inside of me. I would feel like some sort of blow up doll if I ever had sex I think. Even if surgically it held no risks I don’t think I could mentally get my head around it.

The nurse I spoke to said in her very wide experience she knows of only two women who actually put their reconstruction to good use.

 

So there it is.

No need to go in next week, just wait for pre op appointment and crack on with it. Get it done. Recover. Get back on with life.

p.s  I’m sure I’ve said this before but having had to explain the difference to two people recently, get yourselves educated in your anatomy. Vulvas and vaginas are very different things!

 

 

 

Not what I was expecting.

So, I’ve been a bit absent. After my last visit which was pretty horrible I had the frustrating news that it was insufficient sample and my smear had to be re done. I tramped back to Bath a couple of weeks ago, saw Nick, had my smear redone and met a friend for lunch. All rather jolly, all very low key, all good.

Today I got my results. They absolutely weren’t what I was expecting. Having had major surgery just 8 months ago to try and halt this nonsense I was expecting just a little reprieve .

The high grade precancer is back.

I have 3 options.

1. Do nothing. This is so tempting. If I wasn’t a mum it would probably be what I would do. It’s pretty certain that this pre cancer will become cancer but it could be in 10 years time it could be in 6 months time. No one can tell me that. No one can tell me that it can be caught before it spreads. Although it seems a favourable option I don’t think I could honestly quiet my mind knowing I had a ticking time bomb inside of me. But it is, regardless of all this rationalising, a very tempting proposition.

2. Have a further chunk of my vagina removed. This will leave me with such a small vagina it would be useless for all the things vaginas are designed for. It also leaves some vagina left to become cancerous so bearing that in mind it doesn’t seem that favourable either.

3. Have the lot removed. No vagina at all. I’ve been offered a reconstruction. This is in itself major surgery.

Back to Bath next week for further discussions.

Bollocks.

http://www.cancerresearchuk.org/about-cancer/type/vaginal-cancer/treatment/surgery/vaginal-reconstructionimage