Road back to normality after chemo ‘house arrest’

Thanks to everyone for following my story about beating bowel cancer for the last year. In this blog, I want to share some tips about dealing with chemo side effects and trying to get back to some form of normality.

Now, with radiotherapy, my operations and chemotherapy behind me, it is great to report that a CT scan at Northallerton’s Friarage Hospital last month showed ‘no worrying abnormalities’.

It feels like a sentence is lifted and my year of ‘house-arrest’ is coming to an end. With luck, I can start to get back to some form of normality!

But in the 17 months since medics told me I had bowel cancer, I’ve learned to be prepared for the unexpected and to take things one-step-at-a-time.

In recent weeks, I’ve ventured out a bit more and managed two trips to London related to my work as a freelance journalist and communications consultant.

Trusted ‘man-bag’

However, I don’t over do it.

If I go any distance, I take my walking stick and trusted emergency bag. It looks like a trendy ‘man-bag’ – but instead of an iPad inside – it contains pads, toilet paper, wet wipes and a spare pair of pants or two.

If the ‘man-bag’ ever gets stolen, the thieves are in for a big surprise!

My big problem remains sudden and urgent ‘mega poos’, as I call them.

Check out where loos are!

If I don’t dose myself with Loperamide tablets before venturing any distance, I worry about being caught short.

That’s why one of the first things you need to do after bowel cancer surgery is check out where the loos are and be prepared for ‘accidents’.

It is very restrictive, but it is one of the things you may well have to live with after your body is bombarded with radiotherapy & chemo and part of your bowel is removed.

Accepting realities

Nic with one of the chemotherapy registrars

Apart from accepting the realities of being a cancer patient, such as the need to slow down and take precautions when going out, it is essential to be as positive – and active – as you can manage.

I say that as someone who lived in a bit of a bubble while undergoing five months of chemotherapy and needed a second operation for an incisional hernia seven weeks after my bowel cancer operation!

The hernia may have been caused by trying to rush back into things too quickly and so my wife, Ann, continues to do the heavy lifting – literally!

Chemo knocks your immune system to hell, and I abandoned all travel plans, didn’t use public transport or attend any conferences for a year.

I gave up going to the pub at night and stayed away from crowds to avoid picking up a cold or something worse. So, no Italy with EUPRIO or a planned city-break to Lisbon! I didn’t even go the Education Journalism awards in London last November (where, I won the Higher Education journo prize).

Remain as positive as you can

It sounds hard, but I really recommend being as positive as you can and try to avoid self-pity!

Don’t let the advice booklets make you even more depressed as they talk about all the varied side effects you may encounter during and after cancer treatment. You should only get some of them!

For me, apart from sudden urges to go to the toilet, I get tired very easily and have extremely itchy and sore feet – a common chemo side effect!

Working while being treated

I continued doing some work throughout my radiotherapy, chemo and other treatment, apart from the few weeks after both operations.

As a freelance writer, I can work from home – an enormous help! I had to cut back, of course, but interviewing people over the phone and Skype and using social media to stay up-to-date has been a great way to take my mind off the cancer treatment. And, importantly, I’ve continued to earn some money!

If you are self-employed you don’t get sick pay and most benefits are out if you have a small income or pension plus some savings.

Macmillan Cancer Support publish several booklets worth consulting, including Help with the cost of cancer and Self-employment and cancer.

But beware the government looks like cutting back on payments to the disabled.

Trying to stay active

Phlebotomist Geoff Manders withdraws some blood from Nic

After my operations, I was housebound for quite a while, and found even short trips to hospital to see my surgeon and the chemo specialists, undergo blood tests or call in at the wonderful Holistic Centre for some aromatherapy quite an adventure.

Leading up to my operation last April, I even joined a gym after doctors said the fitter I was the better my chances of a good recovery.

But I am only gently getting back to swimming after a 14-month break.

So, staying fit and active is a challenge.

For months, all I could manage was a slow walk around the back garden, using garden furniture as props, or walking down the street to the second lamppost holding on to my wife, Ann, for support.

A neighbour lent me his hill walker stick as a prop, which really helped as I suffered from vertigo after my gallbladder was removed several years ago.

I still take the stick with me if going any distance, and although it makes me look like a little old man it offers reassurance and gives me the confidence to venture a bit further.

Creams, pills and ointments

One of the side effects I still haven’t got rid of is having very sore soles of my feet.

This has caused countless sleepless nights, and all I can suggest is to talk to different doctors, nurses, and other patients to find the best creams and ointments to minimise the itchiness and soreness.

I was eventually prescribed Diprosalic ointment twice a day, which was effective. But you can’t use it long-term, as it is pretty strong stuff.

Try Doublebase gel or Aveeno moisturising creams to soothe things down and take some paracetamol and only use the strong ointment when things get really itchy.

It is the same story with having a sore bum. The doctors and nurses often have different ideas on what might work best. I now use Sorbaderm cream first thing every morning as a barrier cream on my bum just in case it is going to be a day of diarrhoea. You can back this up with Drapolene antiseptic cream, if needed.

If you take Loperamide to stop the mega poos, or as a precaution before going out (I suggest taking two to start with), then you will also need to get things going again.

Normacol and Fybogel are what I use, but take care with Normacol. It is pretty effective within a couple of hours – so only take when you are close to an easily accessible loo.

Until the next time, try to stay as positive as you can despite everything!