I never believed anyone might actually miss the routine that takes over your life during a year of cancer treatment.
But strange as it might seem, there is something reassuring about the pattern of regular hospital visits, radiotherapy and daily doses of tablets and potions while you are preparing for your operation, and then, chemotherapy.
Suddenly the drugs and support mechanism stop, as it did for me at the start of 2016, and you feel very much on your own.
Instead of outpatient hospital visits for blood tests and regular appointments, you must join the queue to see or have a phone chat with your own GP if you want to discuss problems with sleeping, anxiety or whatever.
Going down the pecking order
Now you are down the pecking order! Other patients have more urgent needs, like having surgery.
It is all a bit of a shock, but understandable when you think about it!
Of course, I’m not entirely reliant on my local doctor’s surgery. At my local James Cook University Hospital in Middlesbrough they have a very good Bowel Cancer Support Group, which meets three or four times a year. And the specialist bowel cancer nurses have been just a phone call away if I need to talk to someone.
There is also the Holistic Centre, but that is overwhelmed by the demand for aromatherapy and other such complementary treatments for those preparing and recovering from cancer operations.
The link with the hospital doctors and nurses continues through check-ups and scans. I had a CT scan at the end of January, two months after my five months of chemo stopped.
Waiting for results
But if I hadn’t built up a good relationship with the senior bowel cancer nurses I might have had to wait an age to find out the results.
The CT scan indicated that all was fine, but at one point I thought I might have to wait for my next scheduled appointment with my consultant surgeon to find out. And that was ten weeks after the scan!
I’m now waiting for a follow-up colonoscopy (camera examination), which is likely to be in July. That will help check that the bowel cancer has not returned.
Getting back to normality
In the meantime, I need to work out how to get back to normality as far as possible.
I’ve got back into swimming two or three times a week and I’m pleased to have successfully attended a couple of conferences connected with my work as a freelance journalist and PR consultant. But they were very tiring, involving overnight stays. My first trip abroad in over 18 months – to the Netherlands for a conference two hours north of Amsterdam – was particularly exhausting.
So, plans for a holiday abroad with my wife have been put on hold until after I get the results from the colonoscopy in July.
The booklets produced by the likes of Macmillan Cancer Support and Beating Bowel Cancer warn that many people find it difficult to readjust their lives once the routine of cancer treatment suddenly stops and I know I’m not alone.
Talking to others fighting cancer has been an excellent way to compare notes and I keep in touch with several people in similar situations regularly to discuss how we are all doing.
Don’t keep anything bottled-up is my motto. I’m very open with friends, family and anyone I meet about cancer, as we need to break the taboo that has existed about the ‘C’ word!
Mobility and anxiety issues
I think my problems with sleeping and anxiety are due to my body still being in ‘race-for-life’ mode when actually I’m supposed to be on the road to recovery.
Perhaps, it will take time for my mind to accept this new status after a hard 2015 fighting cancer. But I do seem to be more of a worrier now than I was before the operation.
I am currently waiting for my first appointment to find out if things like cognitive behavioural therapy and mindfulness can help.
But, as with so many services away from the front-line life-saving NHS, waiting lists are very long and I am not sure when that will start.
So in the meantime, I am experimenting with various approaches to help get myself off the sickness tablets prescribed by my GP, which are very effective in knocking me out, but I don’t want to get hooked.
I suppose it is not really surprising that my sleeping patterns are all to pot as the Chemo, Tramadol pain-killers and anti-sickness tablets tired me out – and suddenly I’ve withdrawn the lot.
As an alternative to sleeping pills, I’ve found that taking an anti-sickness tablet with couple of Ibuprofen or Paracetamols sometimes helps get me off to slumberland.
Maybe, I should try alcohol, as since starting to fight-back against cancer I’ve cut the amount of wine and beer right down.
You can’t take sleeping tablets, or the anti-sickness ones, with booze – so maybe I will give that idea a miss for the moment.
I hope sharing this with you helps both other cancer patients and their friends and families know what we are going through
Until the next time, with my Cancer-talk tales! If you want to see my earlier blogs they are archived here.
ALSO SEE ‘Your feelings after cancer treatment’ from Macmillan Cancer Support for more about a practical guide to living with and after cancer.