My own personal opioid crisis...

(First Published October 23rd 2019)

If I’d been told 3 months ago that today I would be suffering withdrawal symptoms having just come off an opiate up to 100 times more potent than heroin I may have had a chuckle to myself.  The drug in question is Fentanyl, one of the major players in the tragic opioid crisis currently being felt in the USA.  In 2018 over 70,000 people died due to opioid overdose, more than lost their lives due to guns or road traffic accidents. 

I would like to say that my 3 weeks on Fentanyl have been a wild and crazy time.  Sadly that is not the case.  I had the drug administered in patches that slowly released a small dose of Fentanyl over a period of 3 days. I’ve just finished a 3 week course which was to act as pain relief once I came off the post op ‘big boy’ drugs. Now it is out of my system I have felt slightly shivery, am struggling to sleep and I can feel my various scars and stitches. So it worked! My only pain medication now is good old paracetamol.  To be honest the pain now is really no more than a mild discomfort and, although recovery is slow and some days I feel better than others, I do feel so much better now than when I first came home 2 and a half weeks ago.  So I am confident that I’m out of the danger zone and don’t feel the need to go out and score some cheap shit to get me through the weekend!

I have had a plethora of high grade drugs over the last month. As I had a few pain issues in the first 3 days following my operation the pain management team pulled out all the stops and my surgeon seemed quite impressed when he studied the list of what I’d been given.  The only one I didn’t get on with was Ketamine. I took it as a liquid and it both tasted foul and didn’t agree with my stomach.  Again, it may have been fun to try all these drugs in a controlled home environment but they gave me little pleasure as they were purely doing their job of making my post operative state as comfortable as possible. The only slight entertainment was during the first couple of nights after surgery. I struggled to sleep due to the discomfort but in those moments when I was half asleep I had some very vivid hallucinations. They were either of faces coming up really close to mine or members of the nursing staff coming out of a cupboard and whisking me off to produce a bizarre film taken with our mobile phones.  I didn’t find it scary in the slightest and, to be honest, it helped pass the time as the nights felt particularly long at times.

The extraordinarily short time frame between the cancer diagnosis and surgery has meant the last 3 months have felt like an emotional and physical whirlwind blowing through our lives. That weather system has now passed and a low pressure system has dug its heels in as I negotiate the slow process of recovery. That is a slightly unfair analogy to be fair as the sun pokes its head through on most days as my strength improves and I am slowly able to do more and more.

There are a multitude of potential complications following the surgery I have had including bowel problems, kidney problems and hernias to name just 3. I have been incredibly fortunate so far and have only one minor issue currently hampering my recovery. The main entry wound, just below my belly button has not healed as quickly as hoped. As a result I have two holes in my stomach.  These are being dressed and packed 3 or 4 times a week and in the last couple of days are starting to show major improvement. Once these have healed I will be able to start some gentle exercises to slowly improve my core strength.  A couple of medical professionals have made the point that it may be a blessing in disguise. I have had some major internal plumbing work done and what my body really needs is rest.  The worst thing I could do is try to do too much too soon and these small wounds are keeping me in check.  All the other wounds have healed beautifully and no longer require any dressings. I am also fortunate that my appetite has quickly returned to as it was before the operation which means I am able to eat high protein, healthy foods which will aid my recovery no end. I am very conscious of ensuring I don’t eat anything that will bung me up. Part of the operation cut a section of my small intestine and the recovery can be notoriously slow and painful. I had one bout of constipation soon after I came home and never again! The pain was severe. I now have porridge every morning, soup for lunch and a high protein supper. I chew my food really well, ensure I drink plenty of liquid throughout the day and take Laxido twice a day. Fortunately I’ve had no problems since although it is still a painful business and may well be for some time.

Living with a bag for life has been a breeze so far.  I may go into greater detail in a future blog but changing the bag is easy and to date I haven’t come close to a leak. In order to keep myself mobile, even if I’m having a day when I’m feeling exhausted, I make sure I get off the sofa every half an hour to have a walk around the house and nip to the loo to empty the bag (weeing is even easier than it was before - I just lift my shirt and open a tap!) It also ensures that the bag doesn’t become too full which can cause it to pull against the stitches around my stoma and increases the chance of leakage.

My greatest pleasure has been sleeping in my own bed. In hospital I was so covered in bags and tubes etc. that I could only sleep on my back. As my wounds heal and I get stronger it is such a pleasure to be able to slowly move around in bed and find comfortable positions to sleep in.  Also, as my bag only holds about 250ml of liquid, at bedtime it plugs into a night bag which sits on its own stand at the side of the bed (in a bucket in case of a leak scenario) which holds 2 litres of liquid so once I’m plugged in I don’t have to go anywhere until the morning which is fabulous and it doesn’t hamper my sleep at all.

So life is good if a little slow paced.  I don’t get out and about much yet apart from regular visits to the nurse to change my dressings. I shower, I watch telly, I read, I wander around the house and the garden (if it’s not raining.) On a good day I’ll tidy the kitchen. I hope to start cooking again soon and start walking further afield - we are fortunate to live semi-rurally so there are plenty of walks straight from our front door. Most importantly I feel well! My body will take time to heal itself but I’m confident that in time I can make a full recovery, albeit with a few changes to what I used to think of as normal. Embrace the new I say as, so far, it’s pretty good.