I felt completely out of control and there wasn’t anything I could do to gain back control, so I just spiralled into depression and consumed all my thoughts with details of death, depression, pain and how I’d be letting my son down by not being here for him. Every time he did anything lovely like smile or giggle or snuggle, I would feel pain because I thought I was only going to experience it for a very limited amount of time. It was truly horrific and the only time I’d feel temporarily better was if I had a cry which would let it all out, but that would only last for a few hours. I just didn’t want to leave Teddy and I was so afraid of having to say goodbye. I am aware, as I write this, that it sounds extremely OTT, but it was all-consuming and uncontrollable.
To try and get back some control, I started harassing the Colposcopy unit I had my appointment with on the hope that I’d get an earlier appointment. I called them 5 times on the Monday (they were very patient!) then on the Tuesday they called me to let me know they’d had a cancellation, so off we all went (me, my son and my parents) for my Colposcopy and biopsy. I had a phenomenal nurse who made me feel extremely comfortable and made the whole process very easy. She said she didn’t feel there was any cancer but obviously she couldn’t say for sure. I took reassurance for this, but I was still gripped by the anxiety which took over again, so within a few hours I was back to the death and cancer thought path. That lasted right up until this morning when I was given my results and told that the biopsy came back with Moderate Dyskaryosis and NO CANCER. As you can imagine, I’m bouncing off the walls now as it feels like I’ve been given my life back. I can’t believe what a horrible experience it’s been, but I am so glad that I’m cancer-free as anything else I can deal with if it means being around for Teddy for as long as possible. I will be having it all removed under general anaesthetic soon, so I’ll do a post on how that goes. In the meantime, I wanted to put together some notes on things that I would’ve wanted to know during the last couple of weeks (I still can’t believe it’s only been a couple of weeks – it feels like months!) so that if anyone else is experiencing the same thing, it might prove of some use:
- Severe Dyskaryosis / CIN3 / High Grade or Severe Cell changes are all pre-cancer signs. Having Googled like a maniac (I say this so you don’t have to – so step away from the Google) I’ve yet to find someone who was sent a letter saying they had any of the aforementioned severe stuff who then had their biopsy results come back as cancer. Obviously there will always be a small minority, but the CIN3 are indicators that cell change has started, and the good thing about Cervical Cancer is that most of the time it takes a very long time to develop, so as long as you’re getting regular smears, you’re likely to catch the cell changes before they turn cancerous.
- As someone who can pass out during a smear test (seriously, I’m useless with anything even remotely medical) I can say with confidence that both the Colposcopy and the biopsy are easy peasy. You sit on a strangely comfortable chair with your legs in the air (like you just don’t care) and the angle makes anything going in ‘there’ a lot more comfortable. The Colposcopy is actually less unpleasant than a smear and the biopsy is so quick and less painful than a blood test. As I said, I was lucky to have a great nurse who made it all very easy for a wimp like me. In some surgeries (including the one I went to) you can watch it all happening on a video screen! Winning! So if you’ve ever fancied getting up close and personal with your cervix, a Colposcopy will do that for you.
- It’s okay to freak out. It’s a scary, scary situation and whilst I’ve been a bit loopy for the past couple of weeks, I make no apologies for it as it’s how I needed to deal with it all. I’m taking lots of good from it and will be sure to be a lot more on the ball with all things medical, plus I’ve proved to myself that I can put my head down and get things done, no matter how squeamish!
- Whilst it’s okay to freak out, try not to run too far with it. Within 48 hours of getting my smear results, I’d developed pretty much every symptom associated with advanced cervical cancer and I was convinced I only had a few months left. RIDICULOUS and entirely my own fault due to excessive Googling and forming stupid conclusions. I really do think Google is your enemy with this sort of thing, as it’s a lot easier to focus on the negative than the positive, so you end up hunting down confirmation that your leg pain is a symptom of advanced cancer rather than just the result of having an overheating laptop sitting on your legs…
That’s all I can think of at the moment, but I will add to this if I think of anything else. The key thing about all this is to keep having regular smears. To prove how common this sort of diagnosis is, Hayley at LBQ had something similar last year and she’s also absolutely fine – read her story here. As I said, I’ll be having the dodgy cell area removed soon (I’ll post about that afterwards) and going on what my nurse said and having a bit of a Google (I can’t take my own advice, clearly) the success rate of having it all removed is very high and doesn’t usually result in any recurrence, so I’ll just have regular smears to make sure I stay clear. I’m so relieved! I can now enjoy a lifetime of snuggles with the happiest baby on earth:
I had a similar experience recently. After a routine smear I was told I had stage 1 mild dyskariosis but I was still having symptoms 3 months later and was referred to the coloposcopy clinic. WIthin 3 months it had progressed to stage 2 moderate dyskariosis and I had a biopsy done. Luckily it came back cancer free but for anyone going through the same experience, I found the biopsy pain free and only slightly uncomfortable. For me the worst part was the embarrassment factor which is silly seeing as how many women they see. For me it was even worse because my mum had cervical cancer when I was a child and I remember her being ill and having to have surgery and radiotherapy but I knew since I’d been up to date with my smears it was unlikely to be cancer. I’d urge everyone to make sure their smears are up to date!
It’s so scary isn’t it? I think people who have cancer in their close family are always going to be a bit more paranoid. Both my parents have had it – my mum had Ovarian which isn’t the same but geographically it’s pretty close, so I’m always a bit nervous of anything relating to that area! So glad you’re okay and thanks for adding your thoughts on the procedures xx
It definitely made me more paranoid even though I know Cervical Cancer isn’t hereditary. I’ve even had a follow up smear after my treatment and no dodgy cells 🙂 I honestly thought the LLETZ procedure was easier than the colposcopy and I could have been back at work later that day even though I took the day off so I’m sure you’ll be fine xx
Oh that’s good to hear as a lot of people have talked about how horrible the recovery time from the LLETZ procedure was – I’m looking forward to just getting it done and out the way xx
Really glad you’re ok xx
Thanks so much Jo xx
Discovering Beauty says
So glad to know you are ok.
Thank you lovely xx
My experience was not the happy ending you had. I had a ‘dodgy smear’ in June and on the 14th July was diagnosed with cervical cancer at stage 1B2. To get to that stage I also had the smear, colposcopy and then a cone biospy where a 4cm tumour was removed and confirmed to be malignant. On the 30th July I had to have a radical hysterectomy at 34, losing my ability to ever have my own family.
I am still recovering from surgery but thankfully the surgery has been successful at removing all the cancer and I do not, at this stage need chemo.
I have blogged about my whole journey and am committed to raising awareness about the importance of smear tests. They are NOT tests to find cancer, they are simply to identify changes in the cells before they get to cancer-just like you have found out.
I am glad you didn’t have to go through what I have
Stacey | Expat Make-Up Addict xx
My advice to your readers is if you are going to go on the internet stick to the NHS and Macmillan websites, they are by far the clearest and most helpful
Thanks so much for your comment Stacey. You were mentioned quite a few times when I talked about what was happening and I was actually reading your blog last night strangely enough! I did read that you’ve got the all-clear which I’m so glad to read and so sorry you’ve had a rubbish time xx
So glad you are ok x