The Big C - the journey towards the rainbow

No Number Notification

How does it make you feel?

Unknown numbers ringing my phone had never really bothered me. I usually just ignored them – my theory being, if it is someone important, they will ring back. Usually, it is a scam call or a cold call which I would rather not answer anyway. I get several a week and I never, ever answer. They are highly irritating, highly annoying and just a plain nuisance.

But when I was first poorly and awaiting diagnosis, I began to realise that unknown calls, or no number notifications took on a completely new meaning - a meaning that would make me shake with nerves and that I struggled to deal with. I was at the Bowes Museum when I had my first persistent no number notification calls. I’d been having tests and awaiting results but had assumed they would arrive by post as most things did. My trip to the Bowes Museum, was a rare day out. I was feeling less poorly than usual; a friend had offered to drive and we had arranged an interesting and fun day out. The calls started during lunch. We were in a very busy cafeteria and it was incredibly noisy but somehow, I heard my mobile ring. Looking at the screen and seeing that it was a no number notification, I cancelled the call as normal and put it away. Within seconds it rang again and this pattern was repeated several times.

Eventually and feeling very frustrated, I decided that I would need to answer and tell the caller to leave me alone, so I left the restaurant and found a quiet corner. ‘It’s the oncology department,’ the caller said, ‘Where are you?’ I explained where I was and asked why and was told, ‘The consultant and the nurses are here waiting for you, you had an appointment with us today.’ I had never received notification of an appointment and had absolutely no idea. My appointment was swiftly rescheduled though at that time I had no idea what it was about.

It was then I realised that No Number Notification calls would become a significant part of my life whether I wanted them to or not.  All calls from the doctor’s and the hospital came this way, there was never a number that I could call back. I dreaded seeing them because it would mean another visit, another test, another procedure or results that I was scared to hear. It became a big part of my life, just like the brown envelopes that landed on the doormat with private and personal written on them – more information from the hospital, more appointments, more blood tests.

Each time I saw the no number message or the brown envelope, my heart would start racing, the anxiety would build and I would have to force myself to either answer or open and read it to find out what was next. It was tough and often I would think, just ignore it though I knew that I couldn’t.

It is a fact of life that these calls and letters will cause anxiety for most people. But being prepared and accepting that this is what is going to happen for a short period in your life will ease the worry and fear. These calls are necessary and the quickest way to get hold of you or to pass on relevant information. And of course, they are not always bad news even though it might seem it at times ! Sometimes the consultant would ring me to say that my blood tests were good, my iron levels were up, my x rays were clear etc. They wanted me to know quickly to put my mind at ease and stop me from worrying, knowing that these snippets of good news would help bolster my confidence and help me through the less good times.

So, my hints and tips this month are:

Be prepared for no number notifications and do not panic. Recognise that they are from your oncologist/hospital with important information for you.

Answer them! Delays can mean missed appointments which you do not want.

Keep calm.  It does not necessarily mean bad news.  It is just a means of passing on information that you need.

Take a deep breath before answering or before opening the envelope to calm your nerves.

Ask for information to be repeated if you are unsure what has been said or are too anxious to take it in first time.

Remember it is for a short period of time only and then you will probably be back to those annoying scam calls that you CAN ignore!!

Be brave, have faith and believe. You can cope with these calls and move onwards and upwards.

Would a holistic approach to dealing with cancer be helpful?

I was reading an article recently on the importance of holistic care when dealing with a cancer diagnosis and treatment.  Writing in the ‘Daily Express’, Robert Fisk says that the NHS believes that all patients should undergo an assessment on holistic needs when they are first diagnosed. This would mean listening to a patient’s worries, however trivial they might seem, and spending time answering them ie using the answers a patient gives to form a personal care plan dealing with the individual and their personal worries.

Talking to other people who have been through cancer, I found that there were many worries we all had in common, but also many worries that were particular to individuals. Most people are worried they might die, lose their hair, be so ill they can’t perform their job properly and so on.  Others are more concerned about the financial impact, losing their jobs and being able to afford basic needs such as heating. These worries on top of dealing with surgery and treatment can have significant effects on wellbeing and recovery.

Treating each patient as an individual would be amazing but clearly doesn’t happen.  There are too many patients, too few practitioners and not enough time. I recall filling in a holistic questionnaire at the beginning of my journey: endless questions about how I was feeling, what I was able to do, what I couldn’t do etc but apart from repeating this at intervals since completing treatment, none of the information taken was used to improve my wellbeing, it was purely to collect data and was all anonymous.  

Speaking from experience, I had endless concerns and these did not stop when treatment finished. Even a few years down the line, I worry or am anxious and I have few places to turn. There are helplines, there is counselling but generally there is a long waiting time – issues are not dealt with immediately and this can be incredibly detrimental to a person’s wellbeing and recovery.

The hospital I was treated at were brilliant at dealing with the physical effects of cancer but didn’t have time to talk me through all the worries I had, so mentally, I have had to work things out on my own. It isn’t easy. If you meet someone who has been through something similar that can be a great help as they will recognise and understand what you are going through and the fears you have, but this means being very open with people which is not always easy to do.

Doctors quite rightly have to focus on the medical evidence they have in order to treat the physical symptoms of cancer. They need to work out what blood results are pointing to, whether the body is physically able to cope with the demands of chemotherapy and whether the facilities are there to provide it. They just don’t have time to ask how a patient is, what their worries might be and all the other little niggles that may present themselves.  Patients are very often asked what side effects they are experiencing so that medication can be tweaked but rarely are mental health questions asked at the same time, other than how are you today?  But if there was time, and these questions were asked, would this not mean issues affecting recovery could be recognised and dealt with efficiently?  Would this not mean patients could be referred for help or to support groups  more quickly? Fisk also suggests more importantly,  that this would mean patients being treated as people, rather than a list of results on their computer.

A cancer diagnosis is a life shattering experience. It is a tremendous shock both physically and mentally and requires an inner strength to deal with it. Having someone ask relevant questions early on could mean dealing with it far more successfully and avoid patients plunging into depression and despair. The Daily Express is launching a campaign to help ensure more mental health support is available for those with a cancer diagnosis believing that a holistic approach could make a massive difference in improving the wellbeing of those experiencing cancer and their loved ones around them.

In the meantime, my advice to anyone who is finding dealing with their cancer diagnosis difficult, is seek out whatever help you can. 

·       Find your local cancer centre, a cancer support group or go online and check out MacMillan or any other forums you can find.

·       Ask your oncologist and the staff at your treatment centre, all the questions you need to. If they cannot answer them, perhaps they can direct you to someone who can.

·       Write down your worries, leave them for a day or two and then study them again. Are they really important issues or was it panic setting in?

·       Talk to family and friends. Explain how you are feeling so that they can support you.

·       Read books written by cancer survivors if you feel able to. Many of them will have experienced the exact same worries and can offer valuable advice or at least understanding. Knowing that someone else has felt the same way can be extremely reassuring.

·       Take time for yourself. Look for ways to rest, relax and recover.

Wishing you all well in your individual journeys. We are all different, our cancers are different and our treatment is different, but deep down we all have our concerns, fears and worries. Keep taking it one day at a time and have faith that things will get better.