Do you really want to know?

It has been an incredible few weeks for me, with my writing work. I have won an award, and started writing for 'Beauty Despite Cancer'  But more importantly, this blog has been shared so much, via social media, recently. The last few posts particularly, have received some fantastic feedback from the readers. I feel extremely happy that my vision of reaching significant numbers of people affected by cancer, is finally starting to happen, and we are now being listened to by some very important Health Professionals.

I have personally, invested a lot of time into this blog, because I believe that there is a need for an independent platform, like this. I am aware that there are a lot of people in the cancer community who are feeling isolated and don't know where to turn. It seems that as more people find us and spread the word, we are beginning to make a difference, and I thank you all for that!

This weeks post came about from some comments that were left on a previous post regarding survivorship. I mentioned that I would like to have known about all the possible side effects of my treatment, to help me plan. The person who left the comments felt that, there was no need to know about something that may not affect you anyway, as we don't all get all of the possible side effects. Which I thought was an interesting way of looking at things, and was very different to my own!

 

On reflection, I have come to have sympathy with that point of view, but only after a lot of thought. This really is the joy of sharing! We don't all agree, but there is always something we can learn from others. I started thinking back to my first treatment permission form that I had to sign. It was full of things that may have happened to me, including dying during treatment. However, whatever the issues were I had no choice, or I would have died anyway!

A lot of those things did not really affect me too much ironically. It was more about the things that I wasn't warned of! Thinking back, no one, even the doctors, knew what to expect. How my body was going to react, to the treatment, or how my mind was going to react to the after effects. Every case is unique.

We all process information differently, too. Some soak it up like a sponge, and others want to know as little as possible. I now understand the point, that we can have an information overload, and we may well start worrying about something that will not affect us anyway. So I conclude that like most things connected with cancer, there is not one single answer.
The response will be different in every case.

In my own instance, I was informed about the physical battering that my body would take, and I was ready for that. Although, I can say that things were even worse than the picture I had painted in my mind. However, what really surprised me was the social and psychological impact that this has had on me. If it had been, mentioned at the time of treatment, that my personality may totally change, I would not have thought it was possible, and I'm sure I would have laughed!

The possible psychological effects were never mentioned, although I am yet to meet someone who remains unscarred after a cancer diagnosis. But it seems we have all been affected differently. Discussing these issues at the start of treatment would create more questions than answers, certainly! Is it a deliberate policy to avoid them? Maybe it is better that we don't know.

 

An alternative train of thought may be that if you knew all the possible side effects of your treatment, you may have made a different choice. Possibly a different regime, or maybe none at all. You may even ask how can you make your best decision, if you don't have all the facts?

In summary, it was better not to know in advance, about some of the things that have happened to me. Maybe it was done deliberately for my benefit. I think I was told as much as I could handle, and I think that varies, depending on your own circumstances.

Do you think you were given all the necessary facts on diagnosis? Would you have liked to know more? Were you given too much information? Would you have changed your decisions, with the benefit of hindsight?

Do you ever feel lost?

Regular readers of this blog will know that I have just returned from a weeks holiday. For a lot of people this is not such a big thing, but due to my illness and treatment regime, this is only the second time I have been abroad in 6 years. Considering that I was a regular traveller, both socially and commercially, this is a dramatic change in lifestyle for me.

After struggling with my change of circumstances for many years, tossing and turning in my own life, trying to make sense of things, I have finally found a way of life that fits in with my health commitments. My treatment and hospital visits involve a strict routine, so I have had to adjust my family and work requirements around that. Everything now fits, and I have accepted my new life for what it is.

 

 

I hadn't realised that I am now in a new comfort zone. Whilst working, I knew how my life was going to run, and had got used to a regular way of life. Although my work was demanding, I could handle it comfortably, along with my very busy social life. I sort of knew what to expect with everything!

As the holiday approached, I became strangely anxious. Why? Our friends, who know Cyprus well, had booked the holiday, and were even driving, to remove all stress. As we approached Gatwick airport, I started to sweat. Everything had changed, it was bigger than I remembered. We didn't even have tickets, just e-passes. I couldn't understand why I was feeling as I did. I hated being on the plane for hours, and felt like a prisoner.

Once we had reached our destination we then had to collect the car, and find our way to our apartments in town. This is where we found a problem! My pal had printed the directions in Greek! It was midnight and very dark, and quickly we became lost. We stopped at least 5 times to ask people, but with a combination of accents and language, we got further lost. We were tired, and I was feeling very uncomfortable. Finally we found a man on a motorbike, who, sensing that we were really lost, very kindly told us to follow him. After many winding roads, and hills, he took us to our destination. What a lovely man!

 

 

The reason, I wanted to write about this today, is that I am shocked, how cancer has taken away so much of my self confidence. Never one to be shy,I can still smile at people and good things will happen, but internally I feel so different! I used to thrive on anything out of the ordinary happening, and was always up for a challenge. The life and soul, wherever I went. Now, self doubt, has entered my world.

For those of you that know me through social media and my cancer work, you might struggle to believe it, but it is true! I still have that air of confidence, but a lot of what I had, has disappeared. Travelling around the world meeting new people was a way of life for me. Now I get worried about a week in Cyprus with my wife and friends!

I don't remember loss of confidence being on the side-effects paperwork I saw before my treatment started. In fact so many thing that I have encountered through my treatment, were never ever mentioned. How do you deal with issues like these? Not through reading a pamphlet, or checking it out on the internet. This is real life! I can only imagine, what would be happening to me now, if I had very little confidence, going into the process.

Feeling lost, brings with it the feelings of helplessness and fear. Being literally in the dark without help is frightening. This is how many of us feel when we enter the uncharted waters of cancer for the first time. This is another feeling, that you would struggle to understand unless you had experienced it personally. It is difficult to deal with things that are outside your normal experience, when you are feeling well. But when you are not, the hills of life appear steeper and higher, and at times insurmountable.

Have you felt like that on occasions, or even regularly? Even if you don't have an illness to contend with, have you ever felt lost in your life? How do you deal with it?