How to Get Through Major Surgery

Welcome to my blog! I put out new posts every Wednesday on topics ranging from careers to crafts, and poetry to health.

The following is supposed to be genuinely helpful for people about to go through major surgery to the abdomen like I did in 2017.

It’s also an opportunity to show off my massive tumour and pat myself on the back for being a big, brave girl. 😉

Regardless, I do genuinely believe that sharing our experiences can help one another (providing we aren’t scare-mongering or sharing untruthful information) because it’s only through sharing that we feel less alone.

Backstory

In Spring of 2017, I had a funny feeling in my right-side when I laid down, so I went to the doctor and told him I thought something was up with my kidney. Being a good lad, he booked me for an ultrasound scan. I got a phone call at work to say they’d found a “shadow”, which scared the shit out of me, and they wanted to do an MRI.
I could tell by the looks on their faces after they’d scanned me that they’d seen something, but I had an agonising weeks-long wait before I was called in to discuss it. I caved and phoned in, to be told that there was “nothing to worry about”, but that the doctor would still like to see me.
(This appointment and what followed changed my life forever, but I guess worrying wouldn’t have helped much)

My MRI abdomen showing my 20cm Phaeochromocytoma
(And yes, I am showing off!)



I went to my appointment and was shown a strange image of a giant mushroom.
Eventually I realised that this was in fact my MRI scan, and that “mushroom” was in me. They said it was a 20cm long mass, and they (mistakenly) thought it was a Hepatic Adenoma, which is a tumor arising from being on “the pill”. They would soon find out they were wrong, but it wasn’t an unreasonable diagnosis based on the scan.
They were very certain, just by looking, that it wasn’t cancer. Happy days. But it was absolutely huge and it was going to cause me problems for the rest of my life, so I was referred for surgery at the Royal London Hospital.

It was only when they opened me up that they realised this was not a hepatic adenoma. In fact, they had no idea what it was. I was put out via an epidural and the surgery took about 8 hours. The tumor bled profusely and I lost a scary amount of blood, so I had several tansfusions when I was moved to the ICU, where I began my slow, arduous, sticky, sweaty recovery, with tubes seemingly coming out of every available vein.

Three weeks post-surgery, I received a call to say they’d tested the tumour and found it to be a Pheochromocytoma, caused by a mutation of the SDH-B gene, which is a tumor suppressant.
The surgery killed off my kidney, but left a small blood supply (they think) which has since caused me to have ridiculously high blood pressure. I’m on several pills to calm this down, and unfortunately a further surgery (awake, I might add, on beautiful drugs) for interventional radiology did not fix my kidney problem.

So alas, I am still suffering in a way, and my gene mutation means I’ll be monitored for life (as will my family), which has its good and bad points. I’m here though, and I survived the giant tumor, so there is that.

I’m not going to talk about SDH-B or the pheo, because I wanted to make a practical post for people about to face major surgery. You could say I learned a thing or two.

So if you’re facing major surgery, I hope this is helpful advice for your recovery. If you have any questions or just want to talk things out, get in touch with me.

Disclaimer: I am not a medical professional. I’m an experienced medical patient but I have no medical knowledge at all. All of the below is based on my experiences only and is not to be taken as medical advice.
If you need medical advice, ask a healthcare professional such as a GP, nurse, or surgeon.

Don’t do it alone

First and foremost: when you know you’re going in for major surgery, surround yourself with those who love and care about you. You need them to look after you. You’ll be struggling to walk upright for a while after abdominal surgery and you’ll need help just to get out of your seat. Not just in hospital, but at home too. This is going to last a while. Don’t despair; you are loved and you will spend this time feeling beyond grateful for the existence of these people in your life.

If you live alone and have contact with your family (and hopefully a good relationship), I strongly advise that you organise someone to stay with you, or for you to stay with them.

If you are estranged from family and don’t have friends who can help, then you need to arrange for carers to help you in the home. Your hospital will arrange for your aftercare if you do not have support at home. They will establish this prior to surgery in their questioning, so be honest.

Let people look after you. You’re going to be irritable, angry and in pain, even in spite of the pain relief. This is a tough time. Try to be patient with people and let them care for you. You’ll be grateful when you’re ‘you’ again.

Pain relief medicine is your best friend

Do yourself a favour and don’t attempt to go through hell just so you can be the hero. You will lose this fight, so you might as well trust your doctors and take the prescribed pain relief.
If you find that the pain relief isn’t working well enough, this may well be for your own safety; you’re going to be given heavy drugs and they might be restrictive with the doses.
What’s more is that the drugs can become addictive (and no, taking your prescription will not make you an addict overnight) and so they might be going softly-softly at first before upping the dose when required.

Some medicines affect people differently than others. Tramadol, for example, made me sweaty, twitchy, and I came down with nightmares. I communicated my issues and they changed me to something more agreeable.
I was on a constant stream of both morphine and Tramadol while in hospital. The morphine was administered first through my epidural (I believe), and later, once this was removed, I took Oramorph (morphine which you administer yourself via a syringe to the mouth). I couldn’t even turn my body to see the clock on the wall, and one nurse joked that she wasn’t going to tell me because I’d be watching the clock for my next dose.

As time goes by, your pain will ease up. My stitches (see above) pulled relentlessly for a long time, but I found pain relief and bio oil helped. You’re on a journey here. Do yourself a favour and use the tools you are given to recover as comfortably as you can

Nursing & physio

In my experience – and as far as I’m concerned – the staff at the Royal London Hospital (and at St Bart’s for that matter) were angels sent to earth. I’ve never felt so well looked after before and I’ve felt so very, very grateful for the care I received.
When I was in the high dependency unit, I would often find myself waking up during the night to find my own nurse waiting right there for me. They’d smile, whisper and ask if I’m okay, and tend to my every need. Whenever I woke up, there they were.
I know you hear some bad stories out there, but please don’t be afraid. My experience of NHS staff has been amazing and I honestly shed tears when I think of them. You are in excellent hands.

Of course, if you are worried about your care or the way you’ve been treated, then communicate this to other members of staff or escalate the issue to the appropriate body. Whilst my experience could not be faulted, I accept that not everybody has had such good fortune.

Physiotherapy begins the very next day after your surgery. When my physio team arrived, I looked at them as if to say “Are you f-ing serious? You think I can get up?!”
There is a very good reason for why they insist on attempting to get you out of bed so soon, and it’s because the body starts healing itself much faster the sooner you get started.
When I first tried to walk, I had a catheter, a drip stand, a tube in my neck, and a tube draining fluid out my right side. I was held upright by two people who helped me walk from one end of the corridor to the other. I was hunched over like an old lady (you will find it hard to stand upright after abdominal surgery) and I was sweating, dizzy, and faint.

However, with their help, I did it. I even went up and down a small flight of stairs at the end.

Sure, I conked out the second I got back into bed and went off into fairyland, but your body is fragile at this point. Your achievements will be little but often, and that’s just fine.

Keep in contact with the ward

When you go home, it’s a good idea to be monitoring your blood pressure and your temperature daily, especially within the first couple of weeks. Sepsis is not likely to occur if you’ve gone home, because they will have been monitoring you for this in hospital, but it’s worth knowing the signs.

However, secondary infections can occur, especially if you’re particularly vulnerable, and in my experience these present themselves via your body temperature. Paracetamol and other medications can mask this by bringing your temperature down, so just try your best to be observant.

If you have any issues at all, your ward will want to know. Do not be afraid to call them for advice. You’ll be on a recovery pathway and it’s their duty to continue with your care even after you go home, so do not go thinking you’re making a fuss or wasting their time. You are what they’re working for.

Recovering at home

I was signed off for 3 months to recover from surgery, and I ended up taking 2 weeks more.

I was one of those dear, sweet fools who thought they’d come bouncing back after just a couple of weeks. Nah. It did not happen like that.

Get things straight with your workplace and make sure they understand that this is absolutely crucial and non-negotiable. No reputable employer would question this recovery period – not if they don’t want to be liable for your health and any injuries incurred if you come back too early.

Recovering at home is actually the hardest part. You are at home, you are grumpy, and you are in pain. You might even be surrounded by well-meaning people who are getting on your nerves.

Try to use this time to rest. I myself got into some pretty interesting hobbies during my time off! I built a snail terrarium in a big green bottle, I bought a big fish tank and bought myself a lovely goldfish, and I practised watercolour painting, amongst many other fads and creative pursuits. This is your time to recover and it’s up to you how you use it.

I found that going on slow walks in nature helped me to get used to my new body while it healed.
I also found that my appetite changed for quite some time and I dropped a lot of weight. Don’t be alarmed; you will be back to your old self in no time and, sadly, you’ll put that weight back on once your appetite returns!

To conclude

I hope this post might be useful for someone who has a phaeochromocytoma or anybody who is facing surgery to the abdomen. I did a lot of internet searching before I had surgery and it helped me to read about other people’s experiences.

Remember that recovery is a physical process, but how you deal with it emotionally is all in the mind.

Be kind to yourself, pace yourself, and give your body the time it needs to heal. Your body puts up with a lot throughout its lifetime and it’s done you proud, so cut the poor thing a break. You, in the meantime, should take up a hobby.

All the best until next time,
Ashleigh

Happy New Decade, 2020!

It’s the roaring 2020s. My god, let this be a better decade for me and for everyone. Don’t you think this planet has had enough grief for the foreseeable?

Normal service will resume next week, along with my work (and blog!) routine and what I hope will be a better year ahead. The last few years for me have been utterly disastrous, both in my personal life and my health. My new year starts off with an appointment to review some MRI results, which I’m nervous about. MRI scans are standard for me; I’ve had many, many scans. This one is to determine if a little lump near my pancreas/bowel is anything scary to worry about. Please keep me in your good thoughts and I’m sure, in some way, the universe will send me your well-wishes.

From me, I wish you a very Happy New Year and a great decade ahead. May you be happy in life and love, may your health be rosy, and may your creativity blossom like daffodils in May (and may your clichés be as strong as mine, especially).

I hope to do a lot more writing and reading this year; my Christmas book haul of children’s classics, which I wanted to catch up on, will be a fantastic start. I’ve made it my mission to read all the amazing classics that I never read as a child, because I was too busy swatting up on Jacqueline Wilson and Darren Shan, who were all the rage and deservedly so.

So Happy New Year everyone! I’ll be back next Wednesday as usual to share whatever quirky bits and bobs I want to talk about next. I never started a blog for anything other than to keep a regular hobby, and to force me to show off any creative successes.
Towards the end of 2019, I was accepted into an NHS poetry anthology by Michael Rosen and invited to their book launch, which is an amazing start. I hope this is a sign of more creative conquests to come!

Have an amazing 2020!

My poems ‘Only The Cleaner’ and ‘In This Room’ to appear in NHS These Are The Hands with Michael Rosen

The NHS anthology named after this 60th anniversary poem by Michael Rosen will be available in March 2020

Well! It seems I have more good news on the poetry front!

TWO of my poems will be appearing in an NHS anthology by Fair Acre Press, called ‘These Are the Hands’, with a foreword by Michael Rosen (up top!). This will be published widely in book shops around the UK and online, and all proceeds will be going to NHS Charities Together.

The book will be published in 2020, and I have been invited to the snazzy book launch at The Worshipful Society of Apothecaries in London. Eek!

I thought today’s blog post could be all about how I got involved:

I happened to be scrolling Twitter – which is a platform I never used until recently – when I found a post from The Bigger Picture, talking about an exciting anthology by the same editors and press who brought us the #MeToo anthology with the Jess Philips MP foreword, called ‘These Are the Hands’.

Well, I bloody-well know that poem, I thought – that’s Michael Rosen!

And yes, there he was – one of the judges for this new anthology competition. Regardless of the outcome, I absolutely knew I wanted to enter something – anything – just to be a part of things.

As it happens, the anthology called for people who were either currently working or had worked for the NHS for contribute poems – thus making up the body of the book, with NHS employees all working together for one common goal – just as they do in real life – with the caterers and cleaners being as crucial as the nurses and the consultants.

In my final year of uni and for some time after, I did in fact work as a Domestic Assistant at Southend University hospital – it’s still one of the most rewarding jobs I’ve ever done, and I loved it.

Let me tell you a bit about the poems

So during my lunch break at work, I got scribbling in my special notebook (the one with the butterflies) and came up with two very different poems.

One is a slightly-rhyming poem called ‘Only the Cleaner’, which focuses on the idle chit-chat and avoidance of the obvious when interacting with patients – the idea being that they could talk to me because, unlike anyone else, I wasn’t there to administer any scary treatment. I was just there to change the bins and chat and pretend they aren’t dying, which sometimes they were.

The other is a more serious piece called ‘In this Room’, which is about the time I cleaned The Butterfly Suite at Southend University hospital, which is a room where women go when they’re very sadly losing the baby. This poem takes you full-circle, describing how I tried to imagine the woman who had been in that room and what she was going through, only to be in her shoes 9 years later.

I can tell you, I was gobsmacked to find they wanted to use both – I’m surprised, but certainly not complaining!

Since my time working at the NHS, I have been a patient more times than I can count (seriously, I lost count of my hospital stays) and I have relied on them to save my life. I’ve also, sadly, relied on them to take care of another life I lost. These are difficult truths, but they are my truths, and I have the NHS and its wonderful staff to thank for the fact that I got through those times safely.

So that’s why I’m incredibly proud to be a part of this; not just because I’m a big fan of Michael Rosen (as a poet and as a person, honestly), but because I’m an enormous fan of the NHS. It needs to be protected at all costs. While surely one anthology can’t solve all its problems, this can go towards the solution in some small way – and besides, didn’t a certain young woman once say that ‘one book and one pen can change the world’?

I can’t wait to share the finished book with you all.

P.S If this teaches you nothing, let it teach you this: have a go at writing some poetry! I always thought I was hopeless at poetry but, in spite of that, I always enjoyed writing it – and that’s all that matters. Art should be for the enjoyment of art first and foremost and, you never know, you might get the bonus of seeing it out there one day!

If you enjoyed this blog post, please subscribe – I put up a new post every Wednesday.

Best wishes,
Ashleigh

2017, artery lines in the ICU – I was the only conscious patient!

What Happens When You Have an Abnormal Smear Result

Welcome (or welcome back!) to my blog. I put up new posts every Wednesday.

Something happened recently which shook me up a little bit, and I thought it would be helpful if I passed on some of my own learning from the experience. You never know who you might be helping by sharing your thoughts, so here goes.

No sooner than I had shared on Facebook about the importance of attending your smear tests did I find my result in the mail.

It was a scary, abnormal result.

Even though I somehow *knew* I would get a bad result this time, it still hurt to have it confirmed right there in front of me, in black and white.

My letter – which repeatedly assured me this was not a diagnosis of cancer – told me I had borderline low-grade dyskaryosis (abnormal changes in the cells of my cervix) and the HPV virus, which can often contribute to these cells lingering.

You can learn more about the cell-grading system here, and about HPV here.

These cells may or may not be pre-cancerous, and over time – if left untreated – may grow into cancer cells over a roughly 10 year period.

Low-grade cells with HPV, however, can usually go away on their own.

The letter said an appointment for a Colposcopy, which is a more in-depth look at the cervix, would be forthcoming.

How I reacted

I’m ashamed to say that I instantly felt terror erupting through my body and I went off and cried about it. The fact is that while I know how I would reassure somebody else with the same letter (and even though I knew low-grade/borderline meant the lowest risk cell changes), I still could not reassure myself.

This is because I have had an enormous lot of grief concerning my health in the last 2 years – some of which I’m willing to talk about, and some I’m not ready to. I plan to blog about these subjects in the future in the hope that somebody else can benefit from my experience. When you’ve already had an enormous amount of medical intervention, countless hospital stays, operations, and appointments resulting in nothing but bad news, you massively appreciate your freedom when you have it. You realise more than most just how much you have to lose.
I associated this letter about minor cell changes with those enormous fears, so naturally came the tears and the worry.

How I dealt with it

Firstly, I shared my disappointment and upset with those closest to me – I told my mum (who I blubbed to), my dad and brother, my boyfriend (who immediately became head researcher at Ashleigh Condon Towers and set about reassuring me), and my co-workers. A problem shared = less of a burden on you.

Secondly, I called the appointments line – my appointment was 26 November, which was over a month away at the time – and asked to go on their cancellations list.
This made me feel like I was being proactive and facing the problem head-on. There was no way I was going to wait a month, worrying myself sick, if I could help it.

By the following Monday, I received a call to say that an appointment had been cancelled, and could I come in at 2 O’clock? Yes, I could – and I brought my mum with me.

What happened at the appointment

I attended the Nightingale Women’s Clinic at Southend University Hospital.

I’ve been here a few times before for various reasons, and I’ve always felt well looked after. This time, I really needed that – and they did not disappoint.

Two extremely loving, down-to-earth, calming, reassuring, intelligent and professional female nurses explained what was going to happen and that they would gently take me through every step of the process as it occurred.

One of them said she’d even had the exact came procedure – and had the exact same low-grade cell changes and HPV virus – and I felt instantly more at ease.

I was asked to strip my bottom-half of any clothing (obviously) and sit in a wonky chair with my legs up in the stirrups. This is always great fun.

Next went in the speculum – again, always a hoot.

Then a camera on a robotic arm was placed in front of my opening – not inside it, or anywhere close to it actually – just between my legs.

The nurse offered to show me the wonders of my insides, but I declined – I’m usually fascinated by this stuff, but for some reason I just didn’t want to see my cervix. At this point, I was still too afraid of seeing something scary, such as a cancerous mass, however unlikely it was. In the end, I did end up seeing it anyway – it looked like a big pink blob with lots of pixels over it, as if someone was shopping it in Microsoft Paint (I’ll explain).

The nurse doing the procedure used a long instrument to swab my cervix, because I’d had a bit of blood spotting (typical) that day, and it was obscuring the view. I’ve described this feeling as someone tickling your guts with a feather – it’s very weird and slightly uncomfortable, but not painful.

After that, she explained that she was going to douse my cervix with a solution which would highlight areas of my cervix in red and green pixels on the monitor. She said this would sting slightly and have a vinegary smell. As well as her well-trained eyes, the camera would be looking for any abnormalities – double protection there.

The solution did indeed smell like vinegar and felt a bit strange, but no worse than a smear test or swab – we’re talking a quick splash here. Then we waited a moment while it developed (your cervix is essentially a Polaroid at this point).

As the solution got to work, it did indeed pick up pixels in red and green – and there were just a couple that were white. These were the cells with borderline changes.

The nurse told me she was very happy with that, and that they were agreeing with the result of the smear. These looked like low-grade, borderline cells which would hopefully go away on their own. I was so relieved.

However, she told me they usually still liked to take a biopsy just in case.

Gulp.

Of course, I agreed to it – but if I hadn’t been too uncomfortable before, I certainly was now. The nurse produced a long, scary Victorian-looking instrument with a clipper on the end – however, she didn’t look bothered and so I tried not to let it bother me either. I held the second nurse’s hand while she chatted to me about what I was going to have for lunch (key distraction techniques at play here!) and assured me I was going to be absolutely fine.

And I was.

The nurse with the instrument took the tiniest biopsy in about 0.2 seconds and I barely even felt its presence there, let alone any pain. It was no worse than your standard smear test and it didn’t hurt a bit. I promise you, if that wasn’t the case, I would be honest about it here – there was zero pain.

They told me I’d get my results in about 3 weeks, but they expected it to be a clear result. I left feeling warm, reassured, well looked-after, and confident that I had received amazing care.

Did you know that not all hospitals offer these in-depth checks on low-grade borderline changes to the cervix? I now feel very lucky indeed. I’ve been given the gold standard of treatment.

Before leaving, I promised them I would tell my family and friends about the experience and assure them that a Colposcopy and a cervical biopsy are nothing to be afraid of.

The key thing I took away was that these are preventative measures. If you keep up to date with your smears and take your health checks and examinations seriously, then you should never ever find yourself suddenly diagnosed with cervical cancer.

They will have found any problems well in advance, way before they could develop into something nasty – and they can deal with them. A brief check online will show you that removal of pre-cancerous cells usually results in a 100% cure of them – as in the cells are gone and, therefore, the risk of any cancer is gone. If cells return, they can remove them again.

Before leaving, I asked the nurses if – theoretically – someone already had cancer on their cervix, and they went for a routine smear test, would that test show up cervical cancer?

They said yes, it should.

This means that if you get a “scary letter” about abnormal cells, then remember: that is all they are. Abnormal cells, not a death sentence and definitely not cancer. You absolutely have control of this and you can ensure your health stays tip-top by attending the recommended appointment and having any treatment if necessary.

Whatever happens, you have got this, you’ve taken control of it, and you will be looked after by the professionals.

Aftercare

The advice for me was to not have sex for a day or so and to use condoms if you do. If you needed cell removal treatment, then obviously your cervix needs to heal, so follow the advice they give you.

I was told to expect a bit of tail-end period-style blood (which I have had) and maybe some gentle cramping (which I’ve not had).

Ultimately, what I do have is a feeling of control and relief that I could face this head on, and that I didn’t get any nasty surprises. I am beyond grateful to the staff for making an uncomfortable procedure so bearable – and honestly, it wasn’t even that bad at all.

If you need to attend a Colposcopy and if you need to have a biopsy, you have absolutely got this. Don’t run away from your smear tests or your follow-ups – you can do it. You will feel like a boss afterwards, I promise.

So there you have it. All’s well that ends well. I hope you found that useful and, if you have any questions, please don’t hesitate to ask me.

If you enjoyed my content, please subscribe – I put up a new post every Wednesday! I write about creative pursuits and life in general.