Feeling like a fake…

Well it’s actually been not a bad week! Had a whole week off work, received a bucket load of flowers and a ridiculous amount of texts and cards from well wishers.

But what for? Really, it was a minor operation and I was feeling ok afterwards and, as I keep saying, it’s not even cancer (probably). I can’t think of many other diseases where such intense pre-emptive treatment is taken.

I’m not saying AT ALL that it’s bad that people are screened to pick up these early warning signs as the discomfort I’ve suffered is far less than if I had to have a hysterectomy or radiotherapy, for example. It’s just explaining to people “well, it’s not cancer it’s just something that could become cancer…or may not become cancer” sounds terribly weak sometimes.

I know people understand but sometimes you do feel terribly fake. Particularly as so many people are suffering from actual cervical cancer and undergoing painful and tiring treatment.

A terrible thought is that I sometimes wish that it is cancer so I can exhale and say “There! There is something wrong with me!” But of course, I know I don’t want that. Not because I’m scared of dying, of having chemotherapy, of not having children, but because of two bizarre reasons.

1. The thought of being a ‘cancer sufferer’. I read an article about a woman who was treated for cervical cancer and is setting up a support group up North. Fab, yes, but the paper described her as ‘former cancer sufferer’. Now doesn’t that make her sound pathetic? As if she was entirely  defined by her cancer and she was an absolute victim to it? I know that I would hate to be a sufferer of any disease – I could not STAND the amount of pity I would get!

2. The affect on my boyfriend. I’ve mentioned him before but he hasn’t shown a moment’s weakness at all in the past six months, ever optimistic and cheerful because he knows that is what I need. And if it is cancer? Who would look after him? And if I can’t have children? Does that mean he’ll never be a father? Will he leave me?

It’s strange that those are the two main reasons I’m hoping that the results are good from the last biopsy. Fingers crossed, I’ve said that so much in the past few months even though I don’t believe in that shit. Fingers crossed.

LLETZ under GA – what to expect

Hi all,

I know it’s gone midnight and I’m still recovering from my general anaesthetic, but the one thing that keeps nagging in my head is that I WISHED I’d been able to read a blow by blow account of what happens when going under GA and how I felt after my LLETZ. So this is for anyone, particularly the Jo’s Trust ladies, who have to undergo this.

Obviously I know every person and every hospital and every clinician will be different, but I really hope this is helpful for someone (even if it just puts my friends’ minds at rest!).

Pre Op Screening

For me, as soon as I found out I was going to have to go under GA for the LLETZ, they sent me to the ward where I would go to wait for my operation. After filling in a few questionnaires (do I smoke? how much do I drink? do I have allergies? etc etc) they took my height, weight and tested my lung capacity (this is because I used to smoke quite a bit).

All of this tests ensured I was safe to go under GA and that they administered exactly the right amount of anaesthetic.

After this, I was swabbed in my mouth, nose, ears, armpits and groin for MRSA – I got to do the armpits and groin myself! I also had to wash with this antiseptic Hibiscrub for three days before, including my hair. Also, remove makeup, nail varnish etc for the day.

Pre Op Assesment

Ok, so this happened for me two days before my operation. I met with a nurse who made sure I fully understood what happened. She was brilliant; real layman’s terms. She took my blood pressure and my escort from hospital’s details.  Then I met with a 12 year old doctor who checked my heart rate and to see if I had any infection. Doogie Howser also quizzed me on how much I knew about the procedure. I then signed a consent form saying that I knew why I was having LLETZ (I also learned it stood for something like Large Loop Excision of the Transformation Zone) and what the risks are. He also promised they wouldn’t do any other treatment whilst I was under without my consent unless it was to save my life. Then, I dropped off a blood sample or three to check for things like sickle cell etc and that was it.

Day of LLETZ

So, my operation was at noon so I had some toast at 7am and some water about 10am. Got to the hospital and I had to give a urine sample straight away. Not sure why. Then I labelled my bag with my overnight stuff in (just in case) and I met with a doctor. She again explained what was going to happen and made sure I understood it all. I liked her – she said she had a gut feeling I’d be alright! Then I met with the consultant doing the operation, also very nice, just to AGAIN make sure I knew what was happening and to answer any questions. After that, the anaesthetist met with me so…yes…you guessed it…he could make sure I knew what was happening and ask questions. I then changed into a backless gown (not so bad – tied from the waist up) and my dressing gown and slippers. Waited a short while then confirmed my consent and walked to the anaesthetic’s room.

I was greeted by five people who confused the hell out of me! I just did what they all said, to be honest. I removed my glasses, dressing gown and slippers and jumped on the bed. They wired me up to a heart rate monitor and a blood pressure monitor (routine apparently) and tried to put a drip into my left hand – no luck on the vein there (OUCH!) but they had success on the right hand. They put an oxygen mask on me and told me it would all sting a bit. What an understatement! I could feel the anaesthetic crawling up my veins and it stung like hell! I’ve never had anything injected into me, it was so strange. Then, a second later, asleep! Just like that.

The LLETZ Procedure

I won’t say much about this as I wasn’t awake! All I knew was that I was put in stirrups, had a speculum open me, they operated succesfully and removed a decent sized sample from the cells at the top of my cervix. An anaesthetist stays with you the whole time and you don’t remember anything!

Waking up

I woke up to the sound of my favourite song on the radio “Running up the Hill” by Kate Bush. I was a bit groggy and told the nurse this and said “She lived next door to me once, you know, 48 and I was at 46″. I kept saying this over and over again – I think she just ignored me.

I didn’t have my glasses so was a bit disorientated. They offered me some water and I sipped it slowly as my throat hurt so much. I was cold and had a blanket. Eventually, I was pushed on the trolley to the recovery ward.

Here all my bags were and I was offered more water, a cup of tea and a sandwich. I had really bad period pains and was starving so was grateful for the food. I ate it all quite quickly.

I also had on a massive pad (thankfully not a gauze pack and a catheter) which they just put inbetween my legs for the bleeding. I also got my glasses back finally! As soon as I could walk I went to the loo to put on a more discreet sanitary pad. I also set off the emergency alarm but that’s neither here nor there.

As soon as I’d got out of the operation theatre, they called my boyfriend and told him to pick me up at 5pm. This put his mind at ease because it took 2 hours from going to the anaesthetist’s room to leaving the operating theatre!

I asked the nurse if I could get dressed and go as the doctor had come to see me, told me it all went well and her good gut feeling was still there! So I got dressed and went to the waiting room. Eventually Oliver joined me and they removed my drip and the sticky patches the cables were attached to and she prescribed me co-codamol and another hardcore pain relief drug. Waiting for the taxi, she ran out to greet us – she’d forgotten the antibiotics. I had to take all four of the antibiotics when I got in to keep off infection.

So there it is. I responded well to the GA but I know a lot of people don’t. I was amazed how quickly I went out and how my period pain went away. It really went as good as it could and all the consultancies with the various experts REALLY put my mind at ease. If something had gone wrong, I’d trust that they knew what they were doing.

Next time, I’ll do what to expect at a colposcopy and punch biopsy!

The day before the operation

Been a busy week and it’s only Tuesday. I guess that is what happens when your mum comes to stay. I know the idea is that she’s meant to be looking after you, but it don’t half involve a lot of running around like a headless chicken. Oliver has been working non stop and the cat has been doing my head in, so I feel anything but relaxed. Kathy is texting me work gossip so I don’t feel as if I’m missing out anything vital there.

Anyway, went to the hospital yesterday for me pre operation tests (blood tests, heart pressure, making sure I knew what was happening) and a nurse there explained my results and what is up with me better than anyone. Basically, my smears have shown severe changes in my glanduar cells (this is called CGIN – CIN is changes in the squamous cells which are lower down and easier to reach). The glanduar cells are right at the top of the cervix near the womb and are very difficult to reach and see. This is why the colposcopys I’ve had have come up with CIN1 – because all the abnormalities are a lot higher. This is quite unusual so go me – I’m special.

So on Wednesday they’re going to take a load of cells off me with this super heated loop (LLETZ) and it will take a deeper section than if I had CIN3 (which is why I’m doing it under general anaesthetic). Then in 4 – 6 weeks after that I’ll definitely definitely know how severe and abnormal the changes are. They may not have treated them all with the LLETZ so I may require the cone biopsy – that’s the one where they take out most of my cervix. Again, if I had CIN3, they would take out a lot less and go a lot less deeper.

So that’s it, in a nutshell. Can’t wait to find out for definite how severe these changes are and if we’ve been worrying for nothing. It’s been six months now since that first smear so they’ve really rushed me through to get this operation; it’s quite funny being called an urgent case. I’m just not looking forward to the waiting for my results of the LLETZ, although I’ve figured out that the sooner you hear from them, the worst the news is (if it is cancer, they’ll probably call me in 2 weeks).

It’s funny, my mum and boyfriend are in massive denial that it could be bad even though we don’t know for sure that it is not. I know that if it is, they’ll just remove my cervix and I can still have a family maybe. They’re more worried than I am.

Plus the doctor was blatantly my age or younger. Feels very strange having a young man read your heart beat. We went in and he said “Do you know the operation involves?” I said yes and he said “So tell me”. It was like a test – you know when you just remember certain keywords in an exam and try to fit them in, it’s like that “Er…superheated! Loop…abnormality. Erm…did I pass?”

It was also embarassing answering the how much do you smoke/drink and what contraceptive do you use questions in front of my mum! Good thing I’ve not smoked in a while otherwise she’d have a go “I thought you quit!” Argh.

Ok, so I’m washing with literally antiseptic (message on bottle: do not let liquid come in contact with brain), I’m not allowed to wear mosturiser tomorrow, I’ve taken off my nail varnish, I’m allowed toast before 7.30 am and then water until 11am and Oli has to take me home after. I’m a bit embarassed about my high school musical slippers but I guess this is a hospital ward and not a fashion show, as my mum would say.

Sex and the cervix

One of the biggest impacts that this whole abnormalities business has had is the affect on my relationship with my boyfriend. I still love him dearly and he’s been incredibly fucking good to me throughout this whole thing but, as you can imagine, after months of being poked at, burnt with acid (ouch!), examined under a camera, smeared, wiped, scraped etc etc my lady parts aren’t exactly burning with sexual urges. Of course, Oli being Mr Nice Guy he’s not let this worry him and, even if we were allowed to have sex, he wouldn’t ask me to as he knows it’s a pretty sore issue for me at the moment (pun intended).

So how do we get around this? Could this push me and Oli far, far apart? According to a lady on Jo’s Trust forum, sex can be used as a way to gain control back over your body and your lady parts (fucks sake, I’m writing a blog about cervixes and I have to use the words ‘lady parts’ to describe my vagina). I’m not sure about this but I see where she’s coming from. My ‘lady parts’ seem so other wordly to me at the moment and the UNSEXIEST thing ever, trust me.

I associate lying on my back with my legs apart with having a strange indian man stick a camera up me, cut me three times and then seal the wounds with acid. Yowch.

So when will it all get back to normal? God knows. I’ve told Oli he can have a mistress but he’s not too keen on the idea, bless him. I actually think it’s made our relationship stronger; he’s really pulled out all the stops for me and it’s nice to have him look after me.

I’m sure it will all go back to normal soon. When I get the all clear, I’m going to declare to the world that me and Oliver are going to be together FOREVER! Hurray.

Worst things about waiting…

As I’m feeling slightly less positive than earlier this week, here are my worst things about waiting (for treatment, for results, for anything!)

  1. The mad speculation: seeing as my smears have all showed abnormal changes but all five of my colposcopies have come up with nothing, I have no idea if I have CIN1, CIN2 or whatever…it would be so much easier if I knew what we were dealing with. And as I’ve had no confirmation on the abnormalities and what stage it’s at, of course my mind instantly thinks of the worst. And the waiting means my mind just races and races…
  2. The affect on my loved ones: my dear boyfriend has been so good for the past few months. He’s been to every single hospital appointment with me, asked my clinician all the right questions. But still it’s hard for him and my mum as they’re waiting too…and they have to deal with my stressy outbursts and they’re not allowed to visibly worry or get upset in front of me. Not that I would mind, of course not, but Oliver has been so careful about being upset in front of me.
  3. Work: it sounds stupid but I can’t say to my boss “I’ll have to have the 14th off as I’ve got a hospital appointment” as I’ve no idea when I’m going in and for whole long. Coupled with the fact that I’ve got to start a new job in a few weeks…I don’t want to have to take a whole week off after only starting their for a day or two.
  4. Did I mention the mad speculation?

Well, I have a consultancy on Monday afternoon where I can tell the clinician I’ve been bleeding for the past week so who knows if he’ll stick a camera up me again (sixth time!) or say I can’t have the operation or say I can go ahead with it anyway. He might not think it’s anything to worry about. Christ’s sake, at least my mum will be there.

Yes very negative. I’ll be more upbeat on Monday!

Jo’s Trust

A big shout out to Jo’s Trust, the most informative website with info on cervical cancer and abnormalities. The forum and ask a doctor is a life saver and I only wish I’d heard about them sooner so I could make their meet up.

Link here: http://www.jostrust.org.uk/

Waiting, waiting, waiting….

What I wasn’t prepared for before all this happened was the sheer amount of waiting I’ve had to do…waiting for results, waiting for a space to come free so I can have my LLETZ, waiting to find out if it’s as bad as we all fear it is. It’s natural for everyone’s minds to start speculating wildly at this point and really thinking the worst.

I think the best way to overcome the dread of waiting is to just get on with everything. The time it’s worst is when I’m sitting in on my own because I can’t be bothered to go out and see my friends, and then I start hitting Google looking for the worst case scenarios. The times I actually go out, for a walk or a cycle or to see friends, that’s when I forget.

But whilst waiting for the hospital/clinic to get back to you, you can’t undersell the importance of chasing these people up. After my last biopsy I was told that I would hear from them within 2 – 4 weeks (a number of people had to meet to discuss what treatment I should have). I waited three weeks and ended up calling the clinic. They wanted to see me in the next four days and were surprised I hadn’t recieved my letter.

So that’s my tip for the day; hassle the secretary at the colposcopy clinic! It’s their job and she got back to me really quick last time.

UPDATE: Run the clinic and my operation is next Wednesday!!! I have a meeting with the consultant on Monday afternoon and then the operation on Wednesday. What did I just say about chasing these things up?

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