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Featured by Cancer Knowledge Network – check out this link.
It’s good to be busy, it can take your mind off stuff you don’t really want to think about. That was my tactic after being diagnosed with incurable Neuroendocrine Cancer. I just kept working and working and was still sending work emails and making telephone calls on the day I was being admitted to hospital for major surgery. After all, how could they possibly function without me? Although I was banned from work after the surgery, I still dropped an email to let them know I was doing cartwheels down the hospital corridor. They expected nothing less.
I guess the image of ‘invincibility’ was important to me at that time. It was part of my personal expectations and credibility. Some 6 weeks after leaving hospital following a 9 hour open surgery, I literally crawled back to the office, weak and drawn but determined to ‘make a statement’ by dint of my physical presence. A round of applause was given and for me this was as effective as any medicine I was taking. My credibility was intact.
Treatment, tests and consultations would now be managed around work instead of the other way – after all, they couldn’t possibly function without me? This ‘charade’ went on for some time until I eventually realised they could actually function without me and the only person expecting me to be ‘in service‘ on a treatment, testing or consultation day, was me. Additionally, it became patently obvious that people would totally understand my reasons for slowing down. However, a more serious message was being received from my body which was hinting it was more delicate than I had thought. My credibility, until hitherto sacrosanct, was taking its toll and things weren’t really back to normal. I began to realise I needed a different and better ‘normal‘.
After my ‘eureka’ moment, I totally changed my lifestyle putting my health above my credibility in the ‘pecking order’. I still keep busy – that’s important. I’m now happily doing things I enjoy at my own pace and my fatigue levels are now under control. Here’s my 5 top suggestions for prioritising your time and activities to be able to live with an incurable cancer.
- Reduce your stress. This is difficult with the modern life we now lead but if you can live without things that cause you stress – cease or drastically reduce their effect on you and boldness might be required to strike the right balance.
- Quality sleep. If your illness has a fatigue element, a decent night’s sleep becomes more important. Get into a routine if possible.
- Take time to exercise. It doesn’t need to be a marathon or a climb up Mt Everest. Even a regular short walk is enough and you can build up from there. This also helps with the sleep, fatigue and stress reduction.
- Learn to say no more often. This is difficult, particularly if you are the energetic multi-tasking go-getter type but your body has a voice – listen to it.
- Do more of the things you enjoy. We’re all guilty of procrastination from time to time but get more of the things you enjoy into your calendar, it supports all the other suggestions above!
I now have a new ‘normal’ and I feel healthier and more positive. I sometimes think I might be taking on too much leading to a return to the ‘old ways’. However, the big difference today is that I have no qualms about taking myself ‘out of service‘ or reducing my workload and commitments. My body tends to remind me now and then.
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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!
Rossina – work can actually be good for a cancer patient if they are capable of doing it. I worked normally after my diagnosis, clearly needed time off for treatment etc. I did this for nearly 4 years until I decided to make a clean break. I was in what you might say was a high profile and stressful job and it did keep me going physically and mentally – but it wasn’t easy. I thought long and hard about whether to take on a part time role but decided I just wanted a clean break. I’m quite fortunate that I can survive without the pay but I guess other people actually need to work so it must be really difficult. I don’t know how old you are but I suspect part time is a good place to start? And you should get some support from your employer (in UK this is law).
“Sorry, I am not in service”. Ronny, your quote stayed in my head since I read it the first time. I am considering putting myself back in service but this time as a part-timer. 30 hrs/week. I am scared as I don’t know how my body will react to my resuming my job duties after 6 months of disability. The “what if’s” linger around my mind constantly but I feel that I have to try. Any advice? As you know the NET metastasized in the liver, most of it, so it is non-operable. Should I expect any symptoms I am still not aware of? What are the chances of it remaining at a stable stage if receiving octreotide once a month? Etc etc etc. It is scary not to have answers to the what if’s.
Great blog 🙂
Cheers, I think it’s going to be featured ‘externally’ – details to follow 😁
Well done, I see a book coming next 🙂
Hmmmmm 😄
I was diagnosed in 2003 during abdominal surgery – for 5 years after that I still did the same thing, go to work, volunteer, raise a family and worked my health around all of these. Reality hit me in 2008 when I found out that indeed I had liver mets, from that day on, I resigned from my job after applying and receiving approval for disability, stopped all volunteer and slowed my life down. I do what I want for who I want, when I want and am enjoying life much better and taking care of myself. I don’t feel guilty anymore when I am just too worn out or not feeling just right and take a down day! Everyone should do it!
Outstanding comment Vickie!
Hey! Nice new look!!!
Well, I must confess….I have a similar personality.
This is how bad it got before I quit. First, know this, I was living alone!
I would wake up and lean against the wall so that I could make it to the bathroom and start my day.
I would have to take breaks walking from the parking area to the office.
I couldn’t walk to the cafeteria at work any longer….I would get dizzy.
I would sit in my chair and hold on to the desk because the room was spinning.
Thank goodness for my wife. She talked sense into me and I resigned.
It took her over an hour
It’s a good thing she loves me!!! 🙂
Wow – what a story Ed. Thank you.
After I resigned, my health took an uptick. I was pushing it. Sadly, I cannot work now which is very frustrating for me. My wife phrased it this way. I needed to refocus my energies on my health and fighting the cancer. I was NOT sitting idle but working hard at trying manage my health. I have to remind myself of this quite a bit. I’m currently trying to find a way to make an income based on my limited hours and energy.
Ronny,
This definitely resonates. Even four years after diagnosis, it is sometimes difficult to admit that I cannot be the same man I was. I’m very glad that I had retired a year before diagnosis so at least I did not have to deal with a work situation as well.
Just this weekend, I had a home maintenance task that would have taken just a couple of hours a few years ago. Now it took two hours on each of two days. I was proud that I could do it at all.
Cheers Cy – I find there is now a finer line between procrastination and taking it easy – if you get my meaning 🙂
Right on point Ronny.
Ronny, your blog titles are always incredibly creative, drawing in your faithful readers as well as new blog followers. You have a wonderful way of sharing important information while adding the personal touch. We look forward to reading all of your posts!
Oh – that’s a quote for my front page comments! Thank you so much, this one has been on the burner slow cooking for a while. I suspect it will resonate with a lot of cancer patients outside our community too. Thanks again