Thoughts, feelings and general musings on being diagnosed with cervical cancer
Warning: this post references post-surgery bleeding and pooing and tries to provide attempts at humour.
My advice for any person who is about to have a Trachelectomy procedure and wants to know what to prepare for afterwards is this: –
That’s the only thing you need to do now. Whether this be mentally, physically, spiritually or grammatically please engage in some selfish behaviour that isn’t even that selfish to begin with.
The hospital that performs the procedure may very well have their own pamphlet to give you but I am sadly lacking in pamphlet producing facilities so instead am giving you my own ‘Gerry general guidelines.’
Remember, however hard I try and convince you otherwise – I am not a medical professional.
I’ll start with my top three tips: –
Recovery time is approx. the same as a Hysterectomy but as always, recovery time will differ from woman to woman as our wonderful, amazing bodies do what they need to do. How quick or long another person’s recovery is will depend on a whole host of factors that relates to that individual person. Recovery is not a competition. Take whatever time you need as there are no prizes for getting back to work first. Unless of course you see getting back to work quickly as a prize and if that is the case, you need a hobby my friend.
The surgery you have just had is an internal one – there is a saying ‘out of sight, out of mind’ and because you can’t physically see any scars or stitches then it can be easy to forget that you have just had a massive surgery. If you do forget this and overdo it then you will certainly be feeling the effects of that surgery. Unless you want to start doing something aerobic with a chair and a hand mirror you are not going to know how you’re healing internally so stick with the recovery guidelines your hospital provides you with.
Sleep when you need to as that’s when bodies do their best healing. Listen to what your tired self is saying and take yourself off for a nap or two. When you are awake try and do things to keep your mind active as your body certainly won’t be. Which brings me to say… Don’t worry about your body. You’re going to be wearing pyjamas for a while and yes, you are going to gain weight. This is what happens when you can’t move around too much but it’s fine. Weight gained can always be lost. There will be plenty of time to run that marathon when you are back to full energy.
Six weeks seems to be the ‘magic’ time period when you can start to tick off all those life goals; begin driving again, go back to work, introduce gentle exercise, use tampons and (my favourite) have baths. It appears that ten to twelve weeks is the even more magic time period when you can start having sex again. That is, if you feel emotionally ready to have someone wave their dick around in that general area.
For weeks one and two you are generally not allowed to do anything that means effort, including lifting something heavier than a full kettle. This sounds fun until you realise how much you are suddenly not able to so. I am British, I need my tea dammit! And this is why I will introduce a fourth tip: –
Get someone to help you. Prepare to be waited on like a particularly unsexy Cleopatra.
Oops wrong one.
One of the many, many life errors I have made is not always taking my own advice. At least, not initially anyway. I decided to take matters into my own hands and learn… the hard way.
The hospital sent me home with a plethora of drugs. None of which were exciting. There were uber-strength paracetamols, uber-strength ibuprofens, some stomach thing to ease digestion, some kind of stool softener and all the Fragmin injections I needed to stop myself from clotting for 28 days.
I thought I would ‘boss’ it out on my return home from the hospital and not need to keep up with the pain medication because I am Hard and do not need silly things such as pain medication after having gynaecological surgery.
‘Instead,’ I thought, ‘I shall Level Up!’
Hahaha. Oh Gerry, you sweet summer fucking idiot child.
That very evening, as soon as the hospital drugs had worn off, I found myself exhausted and in pain and spent a gloriously lengthy amount of time sat on my bed sobbing into our vomit bucket whilst my partner rubbed my back.
Another tip for you: –
Take. The. Damned. Pain. Relief.
As it turns out, for the first few days I didn’t need the stool softeners. That was because I was suffering from the side effect that happens to me when I take too many pain killers – a good ol’ upset tummy. This is possibly the first and only time in my life I will EVER be grateful for an upset stomach.
If, unlike me, your stomach can actually handle an influx of painkillers then I would suggest this next tip: –
As unattractive and unappealing an idea they may seem – make sure you stay on top of the stool softeners.
Let’s just call a spade a spade, or a poo emoji a poo emoji – no one wants to be straining whilst recovering from a gynae procedure. Aside from when I went travelling and saw the shared hostel toilets I have never been so scared of pooing in my life. So here is another tip for you: –
Take some good reading material or your iPod into the toilet with you and prepare to get comfy.
Nothing says ‘life is great’ then the fear that along with a poo, your uterus is just going to drop straight out and nothing screams ‘fun’ then the feeling that doing a poo is causing some internal stitches to work a little bit harder.
This was my January and February 2017. If I had to experience it, then you’ve got to read about it.
Another experience was about two weeks post-surgery I began to experience something even worse. Apparently, it’s quite common (according to my CNS) but it won’t necessarily happen to every Trachelectomy patient.
This is a Jackson Pollock painting: –
This is Dexter: –
As I no longer have any sense of shame I want to openly tell you that two weeks post-surgery my life resembled both those things. Not only was I experiencing Blood Clots of Doom I was also leaking lymph fluid. Guess from where?? Guess?? Guess?!
I had to be prescribed bed rest by Doctor Mum. Here’s my other tip: –
Get yourself a Doctor Mum. But sorry, you can’t have mine.
I have many embarrassing moments of my life but I think nothing can top this one. It deserves its own trophy.
I was passing such heavy blood clots that I was beginning to feel dizzy and was genuinely considering the fact that I would need to be taken to hospital. That isn’t the embarrassing moment. The embarrassing moment was when my mum had to help her 31-year-old daughter on and off the loo and pull her pyjama bottoms and pants on and off whilst witnessing the Blood Clots of Doom.
Still that wasn’t the most embarrassing thing. The worst was the realisation that body grooming hadn’t been something that was a) on my mind or b) remotely achievable and so I was beginning to resemble this guy…
“Sorry Mum about my hairy minge,” is not something that I had as #lifegoals.
However unpleasant this stage is, it is a stage that doesn’t last forever. The blood clots and the feeling that you’re climbing Everest when you walk the stairs and the 20cm bruise on your hips (plus all the bruises on your wrists, elbows and stomach) will eventually fade. Soon you’ll be slapping a 10% off discount sticker over your knickers and laughing about how damned funny you are whilst your partner looks at you with a look that doesn’t exactly say ‘amusement.’
About three weeks after surgery was when I started to re-enter society. Imagine an alien lifeform hatching and venturing outside for the first time. Horrible. Does anyone else realise that there are people out there?! Tip: –
Don’t ever go outside.
Ok, no that’s wrong.
Build up going outside/ doing exercise gently.
I was oddly nervous about seeing people, even family and friends afterwards and even now, months later, I still feel a little nervous if I’m seeing people for the first time since being diagnosed, especially if they know. Cancer acts as a little shadow that floats around you and your conversations for a while.
I started building up outside life by visiting my local garden centre where the clientele was predominantly the over 60’s. Some of which managed to overtake me. At one point I was sat on a garden chair, catching my breath and I looked over and next to me some gentlemen in his 80’s was doing the same. Yeah, take your time. You’ll get there. Now I practically run to look at the guinea pigs in the garden centre.
At some point you will get a call from a pathologist. Before they incinerate your cervix as medical waste they run final tests on it to check that the margins are clear. This is cancer speak for ensuring that there is no cancer in the hopefully healthy tissue that they have also removed.
If the margins aren’t clear then there will be further treatment because they need to make sure all cancer cells are eradicated. If they are clear then that’s great! Congratulations, you are now in remission.
The guy who called and told me that the final path report came back clear said ‘well done’ to me which I thought was weird. Pretty sure I did nothing except miss my smears and grow some cancer. Still…
Receiving that phone call was strangely anti-climactic. I didn’t know what I was expecting, streamers from the sky perhaps? A parade? Music piping down from the heavens?
I thanked him and hung up.
From diagnosis to that first all clear the whole thing took 6 weeks and 6 days. That was it.
That’s not it. It’s not done. Not really. I was told I would be having a consultant appointment about 4 weeks after surgery and then I would be having 3 monthly check ups for one-year post surgery which would increase to 4 months the year after, and then 6 months the year after that.
I was told it would then be annual check-ups for ten years.
I was also told that I would probably have my hysterectomy after I’d had my two children.
I have a lot of thoughts on this but it’s late and I’ll expand on it at a later point.
I have to say this, my remission care sucks. Point blank sucks. I will also be expanding on this at a later point. Trust me on this.
But for now, final thought (if not tip): –
People will forget that you are now in remission. People will forget that you had cancer. People are going to say insensitive things. People will forget because you appear to be the exact same person as you were before. People will move on. People will expect you to stop talking about it so much.
You are going to think about cancer a lot more than you ever wanted. There are going to be days when it is the only thing on your mind. There are going to be nights when you wake up at 4am with paranoid thoughts that you can feel the cancer growing back. There are moments when you will start crying and can’t quite stop.
This is a new life for you now. There will be shitty moments in it. I’m sorry but I can’t and won’t lie. The way you process life will be different. You will be different. But different doesn’t mean bad. Not everything will be bad, some things will be wonderful.
You are wonderful. You are doing just great. You will do just great.
Loved reading this.....i had endometrial cancer....got everything ripped out and have had nonexistent aftercare ... could relate to most of your blog...it made me laugh and feel not so alone xxx
If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts
who can help.
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: