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)
(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
As Told by Ashleigh 