Just one indignity after another

So I got my letter about my ultrasound on Monday and…joy of joys…they’ll be putting a condom on the probe! Hurray, as if all this shit hasn’t been undignified enough over the past few months, now I will officially never want to have sex again!

I’ve had an ultrasound probe before but I don’t remember the condom part. I don’t know why this is upsetting me so much. Oliver said it’s to make sure I don’t have robot babies, ha ha, indeed.

I just find it all so…undignified. That is literally the only word for it. And I am FED UP!

Jo’s Trust – Ask the Experts

Have I mentioned how great Jo’s Trust are? There’s a section where you can email their expert panel of gynecologists and oncologists and they get back to you with advice. Obviously they can’t diagnose you or anything crazy but their response to my query has helped shape some of the questions I need to ask my consultant in a weeks time.

They put my mind at rest really, and said that if I’m getting persistent glandular abnormalities on my smears then the problem could be higher up. They said I should have had a cone biopsy and suggested I check how deep the LLETZ was – it should be 15mm deep in the canal of my cervix. If it was this deep, I should ask about a hysteroscopy and curettage to see if the abnormal cells are coming from higher up in the womb. They also said I should ask if my case is discussed at the monthly meetings, but I know it has been for the past few months (hence all this waiting).

If the hysteroscopy etc is fine then I just need to be kept an eye on, they reckon.

So I feel as if I’m in a really good position to ask some questions on the 15th Nov. I want to make sure that things are ok higher up and I know they’re keen to preserve my fertility but really…I just don’t care now, I need some kind of resolution!

Link to Ask the Expert is here: http://www.jostrust.org.uk/support/ask_the_expert

Good news … kind of…

I got my letter for an urgent appointment last week and my ultrasound on the 15th Nov is actually with a clinician and not just a technician. I’m making a huge list of questions for him there, top of the list “What the fuck is going on?”

edit: oh yes, more good news: I’ve finally stopped bleeding after my LLETZ!

What the…what?

So I spoke to the clerk at the colposcopy clinic today and she said the LLETZ went well and they found no cancer. Hurray. They also found no pre-cancer (or cell abnormalities). What the…???

So to recap: ALL my biopsies including this LLETZ (which I went under GA for!) showing NOTHING but all my smears showing severe abnormalities. I’m a freak!

I’ve an ultrasound across my entire vagina in two weeks time. So they have totally discounted cervical abnormalities (although I still have to have a check up smear/colposcopy in a month) so I can no longer call this blog Let’s Get Cervical!

What is it then? False alarm? Cancer in my womb? Fuck knows. I’m fed up.

Drop in cervical screening numbers

http://www.jostrust.org.uk/news/articles/2010/10/21/new-figures-show-drop-in-screening-numbers-leaving-more-lives-at-risk

 

Well, it looks as if the ‘Jade Goody’ effect has truly dropped off now. I can’t believe less and less women are getting screened.

I’m not totally surprised actually. Reading through my old reminder letters from the NHS, there was no real sense of urgency. So much was said about how going for a smear doesn’t mean you have cancer, don’t worry etc etc that there was no real sense of urgency about it.

Which is why, like a fucking idiot, I left it ten whole years between screenings. And now look at where I am!

I just wish that there was a higher profile of cervical cancer among women – people seem to be really aware of breast cancer but I think because cervical cancer is gynecological and a bit icky (and also bought about by HPV which is passed on through sexual contact) it’s all a bit more taboo. Well it shouldn’t be!

I think my friends are much more aware of how important it is to go to smear tests but I wonder about the rest of the female population. I just think about what some women have gone through, not just the cancer but also the side effects of treatment and also the other complications that arise…I just do not want this happening to anyone else! It would be wonderful to stop it…and it is fatal! Young women do die because of it and that’s terrible.

I think we are lucky to have such a great screening programme available through the NHS though – I’m not sure how many lives are wasted in less developed countries where this early procedure just isn’t available.

One week to go

Very quick update: rung the colposcopy clinic and she said that they want to see me again but they all have to meet and review my slides and results. They’ll meet on Wednesday so the clerk said to give her a call Thursday morning to find out what’s what.

My guess? Cone biopsy 😦

She said there was nothing else she could tell me

On a knife edge…

That’s genuinely how I feel at the moment. Any day this week I could get a phone call saying that I have cancer or I need to have a cone biopsy (which I’m terrified of as it will take away most of my cervix and I’d have to stay over night).

It’s absolutely ridiculous how tired and emotional I’ve been, to the point where my memory is absolutely fucked. Most days I don’t even remember much about the evening before I’m so tired.

I want to go out and see all the people who’ve been nice and sent me flowers but I just don’t have the energy. I still get stomach cramps, I’ve been bleeding/having odd discharge for about two weeks now, and I’m just exhausted.

I’m fed up of being poked, prodded, photographed, punctured…sometimes I just think of the absolute indignity of it all and I wonder how I will ever feel normal letting Oliver touch me down there again.

And I’ve been kicking myself, because there’s so much research that CGIN is linked with smoking and I think “Did I bring it on myself? Did I do this to me?” But my friend said last night that maybe this happened to me because I’m stronger than other women and I will use the experience to help others? Maybe.

In my head, I know I’ll be alright, and at worst it’ll be a cone but my emotional response is that “I bet they call and it’s cancer…I bet.”

So on Wednesday the report from histology should be received by my GP so I will give them/my clinic a call on Thursday/Friday to find out what’s happening. I hope it’s ok, I’m so fed up of waiting.

Never underestimate the value of boys

Last week I was feeling pretty crappy after my LLETZ. I was tired from the GA and emotional because I was desperate to know what stage my abnormalities were at and if they were removed with clear margins. I had two days off work after the operations which mainly consisted of me sitting around and moping in front of Homes under the Hammer.

A couple of girl friends sent flowers and texted and called but I was still moping.

However, on Friday, three of my male friends all had the day off work (one broke his wrist at his own wedding, the other works four days a week and the other worked on the Sunday instead) so, along with my boyfriend, they all came round to play video games.

It was a bit overwhelming at first having so many people turn up in my flat all talking and acting normal. I’d forgotten the rest of the world isn’t moping all the time.

But it was great. Not a single one of them asked how the operation went. Rob gave me some sunflowers out of his garden and that was it. It was like an unspoken sentence “Have some flowers, we hope you’re doing ok.”. Most of them didn’t even know what the operation was for and would have died of embarrassment if they’d found out it was on my cervix.

It was really great fun not talking about my cervix, about cancer, about my operation and just taking the piss out of each other and playing Halo. If they were girls, we would have talked about all this and I would have ended up in tears. However, the wonderful simplicity of male friends was a blessing!

It’s not that they didn’t care, not at all. In fact, Matt went out with my boyfriend, Oli, that evening to watch the football and he asked how I was doing etc. It’s just, particularly in a group, they realised we didn’t need to talk about all this and giving emotional support wasn’t their expertise. And for many of them, playing Halo at a reasonable level wasn’t where their expertise lay either!

So I recommend it. For one afternoon, if you’re fed up of thinking about your cervix, get a couple of male friends round and you will forget all of it just for a few hours. Best therapy ever.

What to expect at a colposcopy

I thought it would be useful to give a run down of what to expect at a colposcopy (seeing as I’ve had a ridiculous number of them in the past few months).

You will be most likely referred to have a colposcopy after an abnormal smear. This does not mean you have cancer – just that the smear found cells that are abnormal or pre-cancerous.

So, at the colposcopy clinic, if you have a good clinician he/she will explain what will happen. For me, I was asked to strip from the waist down, put a white paper sheet over my front and lie on my back in a special chair.

With my leg up in stirrups, they opened my vagina with a speculum. At this point I squealed because it REALLY hurt – I told the clinician this and she swapped it for a smaller one which was more comfortable. This should all be familiar from your smear test.

The clinician will then insert the colposcope which is a tiny camera on a stick, essentially. I had the camera screen to my side where I could see it as well. Although I decided not to after a while!

A solution will then be applied to your cervix – acid or iodine, I think. It didn’t hurt, strangely I couldn’t really feel it. This solution should show up abnormalities/lesions.

At this point, I had a punch biopsy (three at one point!). It was a sharp pinch as they removed cell samples from my transformation zone. This is when it started bleeding and I couldn’t look at the screen. I had a wonderful nurse who held my hand throughout and talked and talked to me. REALLY helped at this point.

To stop the bleeding, they put on a substance called Monsel’s Solution with a cotton swap. This really pushed against my bladder and was when I felt the urge to pee more than ever. I always got worried at this point I was going to pee but the clinician always reassured me that I wouldn’t. God knows if I did or not!

The solution will stop the bleeding but will lead to discharge for less than a day afterwards (for me at least). It’s a discharge a bit like coffee granules!

It also means you’ll have tummy pains similar to period cramps. So bring painkillers and sanitary pads with you.

And that’s it. No sex or tampons for a few weeks either (and no douching, but who douches really?). The sample can then be sent off and you’ll be called back for follow up smears if it’s a low grade abnormality or treatment (usually LLETZ or a cone biopsy) if it’s a higher abnormality. If it’s worse than that, they’ll discuss treatment with you and your individual circumstance.

I’m sure that I got some facts and names wrong as I’m not a gynaecologist, and I’m sure everyone has different experiences – for example, I know some women have their colposcopies under local anaesthetic. But this is my experience and I hope it helps someone.

A bit of perspective…

It cannot escape anyone’s attention that Linda Norgrove, an aid worker from Scotland, was killed this week in Afghanistan after being kidnapped. I’ve had the pleasure of spending a couple of days with Linda’s parents who are avid WaterAid supporters and incredibly nice and welcoming people. I can’t imagine what they’re going through but it does make me think that my worrying about abnormal cells which is ultimately treatable is not as significant as the pain that they’re suffering.

It also makes me realise I shouldn’t be flippant and make jokes to my mum about how I’m going to die from this etc. For a parent, there can’t anything worse than having to bury your children.