This has proved the hardest blog to write in my ‘Cancer-talk’ series because many of the things I thought would happen with my bowel cancer operation didn’t and I’m still in a twirl from the after effects a month later, which have just taken a sudden turn (see STOP PRESS towards the end of this piece).
But let’s start with the operation…
It went well – despite planned keyhole surgery becoming open surgery halfway through because of the narrowness of my pelvis, which made it tricky to remove all the suspected cancerous areas of my bowel.
Of course, I don’t remember much apart from telling a nice lady beforehand of my concerns about having a stoma and chatting to the anaesthetist about whether I’d like an epidural along with the other knockout drops.
The dreaded stoma that wasn’t
Colorectal Sister Angela Stanley had earlier prepared me mentally for a likely change to the way I would probably go for a poo, at least in the short-term. She even kindly marked a spot on the lower right side of my tummy where a stoma would probably go.
Taken from the old Greek word for ‘mouth’ or ‘opening’, stoma is the medical term to describe the bowel being brought through the abdominal wall to form an opening on either the right or left side of your belly button so that your stools can pass there instead of via your bum.
They can be permanent (usually on your left side) or temporary (usually on the right side) and help give the reconnected bowel more time for to heal after the operation after the bad bits have been removed.
So imagine my confusion when I emerged groggily from five hours of surgery to find no stoma, either right or left-hand side!
Apparently there was enough room and a blood vessel between the reconnected bowel section and the end of my rectum that I didn’t need one.
So sorry dear readers, I know you were looking forward to hearing what living with a stoma was like, but I reckon the surgeons knew I was a bit paranoid about having a stoma bag on my tummy.
Of course, the downside of not having a stoma is that you have to retrain your bowel movements while the plumbing works are recovering from being cut and shortened in the operation.
But my relief in not having a stoma outweighs what I hope will short-term discomfort.
My post-op ordeal has been made it easier by being able to chat to the three bowel cancer specialist nurses at the hospital, Sarah, Tracey and Angela, who have been able to offer tips and advice via their telephone hot line.
They’ve been a great back up to my own GP over the last month. There really are times when you need to talk to someone who has seen it all before.
Hospital survival tips
One of the main purposes of this blog is to pass on any tips to patients (and their carers) following in my footsteps.
So, let’s turn to the hospital stay.
I feared I might be in for ten days with open surgery instead of the normal three nights with keyhole surgery.
But I didn’t actually feel too terrible after the operation, probably helped by the knowledge that I could give myself a shot of morphine at the press of a button.
In the end, I escaped Ward 7 of the James Cook University Hospital after just four days; having jumped through all the required hoops: eating something each mealtime and following the advice of physiotherapists and dieticians where possible.
I also needed to prove I could wash myself and managed a shower on the third day. As well eating enough to keep you going, have plenty to drink and you’ll need to prove you can walk down the corridor and up a flight of stairs before being considered for parole.
My escape plan was spurred on by a patient opposite who kept his hospital TV blaring morning, evening and night – making it difficult for the rest of us to sleep.
Be prepared!I thought I was fully prepared for my hospital stay and was grateful to the team of nurses, doctors, physiotherapists, dieticians and other staff who tried to make the stay as pleasant as possible in the circumstances.
I had an iPod full of new music, new headphones, night eye shades to block the light – essential as they hardly ever seemed to turn the lights off in the ward.
But I wasn’t prepared for the noise, and not just from my TV-loving neighbour!
I forgot my earplugs, but my wife Ann thankfully brought them in the next day. Definitely take them with you, should you ever have an operation as there is always something going on in a surgical ward.
And chaps, do invest in some old style pyjama bottoms with buttons at the front. They make life so much easier when you’ve got drips and catheters and maintain some dignity.
And do get out of bed as soon as you can!
Radiotherapy blasted bad bits away
Ten days after the operation, I got some great news from consultant surgeon Mr Doug Aitken, when he told me they couldn’t find any cancer cells in the bowel section removed.
It seems chemotherapy and radiotherapy treatment I had in January and February had blasted the bad bits away.
I remember joking when he told me: ‘So, you didn’t need to do the operation after all!’
But he quickly put me right, saying you can’t really tell without removing and analysing the bowel area where the tumour had been.
I’ve since learnt from Dr Hans van der Voet, a consultant clinical oncologist with South Tees Hospitals NHS Trust, that it is quite rare for the combined radiotherapy and chemo to get rid of tumours altogether. He reckons it only happens in 17% of cases and told me the treatment usually just shrinks and loosens the cancerous areas so they are easier to remove via surgery!
More chemo on the way
Anyway, I’m not out of the woods yet!
For both Dr van der Voet and Mr Aitken recommend that I undergo a further six-month course of chemotherapy, starting at the beginning of June.
The chemotherapy is to treat any potential microscopic cancer deposits that are already present elsewhere in my body so that, hopefully, they are prevented from developing into larger deposits later and can be eradicated altogether.
Luckily, I can take the chemo in tablet form. The treatment involves taking Capecitabine for two weeks, then having a one-week off to recover, and then repeating the cycle until almost the end of 2015. The tablets are going to be a stronger form of what I took to back-up my earlier radiotherapy earlier this year. Then, the side effects weren’t too ghastly.
While I was in hospital I couldn’t go for a poo for all four days. And for the first few days after the operation I had a catheter attached to a rather sensitive spot. Well, at least, I didn’t need to think about getting up for a wee!
That clearly gave me a false sense of security and I wasn’t really prepared for the whirlwind when I got home that Friday night.
Two days of sickness over the weekend were followed by two days of severe diarrhoea, which I could only halt by taking five Loperamide anti-diarrhoea tablets.
Nic and the giant …..
Trying to clamber up and down the stairs to go to the loo with that thing coming along too proved exhausting. In the end, I simply decamped to the back bedroom next to the toilet as speed was of the essence.
Nigel Farage cures constipation
I eventually called my GP out. He didn’t like the look of the giant addition to my private parts (nor did I, by the way) and he contacted Mr Aitken, who I saw as an outpatient at the hospital the same day.
Mr Aitken gave me some antibiotics to help with the swelling, but by then I also had constipation brought on by the five Loperamide tablets.
That lasted until a neighbour dropped by the next evening to see how I was and didn’t take the hint that I was literally knackered.
When she told me she was going to vote UKIP and liked Nigel Farage, that did it!
She finally got the message that I was tired and left, and half-an-hour later my constipation was over and I had my first poo in 48 hours.
So, Nigel, your name obviously has its uses!
Recovery at home
While I agree recovering at home is best, providing you have a supportive family and friends, I can’t pretend it has been easy.
Because I didn’t find chemo and radiotherapy too bad, I thought I would get better sooner after surgery. But people keep reminding me I’ve had a major operation.
The worst aspects have been trying to find a balance between diarrhoea and constipation. The front of my tummy where the open surgery took place is also pretty sore and has swollen so much that I’ve had to buy some new tracksuit bottoms. I can’t get into any of my trousers despite losing over a stone in weight since the operation.
I also find myself rather trapped in the house, as I can’t venture far from a loo unless I fill myself with anti-diarrhoea tablets and that leads to other complications
STOP PRESS: I saw Mr Aitken for a check-up on May 22 and when he saw my swollen tummy above the pelvis, he knew why my recovery was going slower than expected. I had a hernia and will be going back to hospital for an operation to put things right in early June. Hopefully, it will be for just one night’s stay.
So my journey to full recovery has some way to go, but slowly but surely I feel I am getting there.
+ If you want to read more about living with a stoma, see here.