The last few weeks have been busy, with some incredibly powerful stories shared, particularly regarding cancer and the work place. I was always aware that this was a much larger issue, than was talked about publicly, and some of the stories I have been told, have reinforced that view. My concern is that there are so many very important issues for people affected by cancer, that rarely get brought out into the open to be discussed properly. It seems that in many instances people feel uncomfortable talking about things publicly, and my impression is that this hinders progress in resolving these problems.
I have found that one of the major obstacles to people dealing with issues is that of course many are coping with the physical and emotional aspects of cancer, and to spend time and energy campaigning for improvements, is just too difficult and traumatic. Thankfully we now have social media which enables like minded people to be able to share work and information effectively. It also enables many more people to get involved, as little or as much as they can. Working together is very much the key!
My subject this week came about from a very surprising conversation I had with one of my fellow patients. I have known this person for more than two years, where we have spent many hours having treatment together. After two years our treatment has been reduced from four days a month to two, hoorah!! But I was then asked, how I would feel when hopefully the treatment finishes eventually. This question shocked me, as of course it would be brilliant for me, but this lady’s answer was more hesitant. She felt unsure about things. She would only be going to hospital for initially six month reviews.
It seems that she has become reliant, on a very caring system that has looked after us for many years. Personally, in the last seven years, I have never gone longer than one month without a visit to the hospital for a check up. I have faced so many issues, that it is thought prudent to keep me close to hospital, and this has proved a good strategy as my health is proving to be very unreliable. I am longing for the day when they say they don’t want to see me for 6 months, and I won’t take it personally! But this made me think, how many people find that the hospital has become their ‘safety net,’ and are becoming too reliant on it?
Of course we need to look after the sick and vulnerable, but I can see that it is a difficult line to drawer, without slowly removing that person’s ability to cope for themselves. During my own numerous and lengthy visits to the hospital, I see many people who seem to visit department after department, almost like a full time job. Naturally everyone who attends hospital, can justify their visit, but I do wonder if many people are attending unnecessarily.
In a lot of cases, cancer treatment and aftercare can continue for a long time, and if you finally get to the stage where you reach six monthly check ups, this can create an issue of it’s own. For most of us, once touched by cancer, the fear of relapse is never far from our minds, despite reassuring words from clinicians. There is an element of ‘security,’ around regular hospital visits. People worry that their blood won’t be checked, and many are concerned that they are no longer having scans they feel they should have. Is this something that affects older people more, possibly but not exclusively. I know many younger people who feel this way too.
Getting back to some form of normality after extensive treatment can be a lot more difficult than you might imagine. Suddenly you leave the hospital for the last time for six months, and the realities of coping at home start to hit. Psychologically this can be a difficult time. For a long time, the focus has been on you. Nurses, doctors etc, all ensuring they do what they can during every visit, friends and family helping too. However, slowly but surely the focus changes.
Like most things about cancer, this can affect us all differently. Adjusting to work, if you are lucky enough to be able to work, is one thing, but getting used to long periods at home when you are not used to it is another. This was a major issue in my own case. Most people can’t wait to spend time at home, but when it is enforced it feels totally different. My wife and I had some massive changes to make. She had her routine, and I had to do my best to fit into that, it wasn’t her fault I wasn’t able to work. I felt I was in a cage and my freedom had been removed. My income had been removed, but I had been given some spare time.
I have seen many relationships break down because of cancer, and I can totally understand that. Not only does it affect the patient, but everyone around them including loved ones. This area of time is rarely discussed, when you are set free from the clutches of your clinicians. They have done their bit, and are on to the next patient. We must now find a way of picking up the threads of our life again, on our own, which in many cases can prove a massive challenge!
Are you pleased to see the end of treatment, or are you unsure of what happens next. If you are in continuing treatment like me, do you foresee treatment ending? What are your thoughts?