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?

The Importance of cancer support via social media

Since I was introduced to the world of social media, I could immediately see how powerful it might be. Certainly, like any new tool, you have to learn how to use it properly, to get the best from it. Which takes time. With trial and error you will find what it does well, and what it does, not so well.

Coming from a business background, and attempting to always keep things simple, I couldn't see what wasn't to like, by connecting like minded people, across the world. Once I found myself taken hostage by cancer, I applied similar rules here. If I can't find physical help for what I need, let me look on the net!

I couldn't find what I felt was required, so I thought I would try and create something. People often ask me why I spend so much time on a project that doesn't pay. But I know, how much difference these blogs make to people affected by cancer. How much they can relate, and how they help to remove that terrible feeling of isolation. Some things are not about money!

Below, I have copied comments, as they were published on my previous post. They moved me so much, that I felt obliged to share them with you. Psychological and emotional support for people affected by cancer, is still desperately lacking, and in a lot of cases, the issues are barely acknowledged. People are carrying this burden constantly, along with their physical problems.

It's not only patients that are gaining from our writing, but I know personally, when I speak to members of my own medical team, how shocked they are at some of the things, they read on my blog, that are happening to me. We are all still learning, but we need to accelerate things. Time is one thing that is not on our side!

"dear chris,

first some background of what I believe has given me a clue about feeling lost. both my husband and I had cancer at the same time - his was multiple myeloma, mine was ST IV meta BC, amazingly, we both achieved remission, also at the same time! we decided to mix the "new normal" and live "life-reinvented", gloriously and to the fullest.

sadly, only 9 months into remission, hugh died -
very suddenly. I found him next to me in our bed with no respirations or pulse. after 3 days in cardiac ICU, he was removed from life support, and I was a widow.

two months later I was diagnosed with uterine cancer, ST 3 with mets to the cervix. I am starting tx this week.

it's my belief that feeling lost is really grief. I know grieving for my husband is a separate (though certainly overlapping) process. but I have spent a great deal of time in retrospect, and now realize that what you spoke about reflects what hugh and I lived when we were in remission - a desire to live on our own terms and not on cancers' term. now, as I navigate towards tx with a new cancer alone, I can reflect in a more realistic way on what both hugh and I might have suffered post treatment - and I know we did feel tremendous grief at the loss of so much. but you see, it was we two, still crazy in love , desperately wanting to celebrate life. there were times we hid our pain and fears and losses - our grief - to help one another be happy.

as I grieve profoundly for my beloved, I feel extremely grateful for all those nine months we had, as well as the time we had cancer together. it almost seems a meant-to-be-ness that we became so utterly entwined and in love with each other, and a same meant-to-be-ness that we were able to live so happily those 9 months - ignorance was truly bliss.

in retrospect, as I read your post, I ponder what all would have befallen us had we not been a couple with cancer, nor achieved a robust remission together, and not flung ourselves head long into a life of adventure and delight. my conclusion is that eventually grief would have had it's way with us, I've wished many times to be able to bring clarity to so many mixed emotions, chris. sometimes my widow's grief is the overwhelming force in my life - hugh has only been gone since may 5th. but as I near treatment for the next gauntlet of cancer to go through now I am more typical of the individual who will face it alone; and even if one has faithful and supportive spouses, family, friends, and whole posse of good doctors - there is still the loneliness, insecurities, fear, and feelings of helplessness.

the big question is how in this day and age, could the medical community dismiss the element of grief from our care. the bigger question looms with more urgency - when and how will the message be delivered, loud and clear, and be dealt with by clinicians who simply give no validation to their patients, leaving them bereft and feeling lost and grieving.

chris, I can't thank you enough for sharing your story in this post. for months I've had such niggling and confusing feelings about insecurity, fear, and at times, just wanting to walk away from all things cancer, thoughts that are so foreign and disturbing. being able to comment meant I had the task of trying to figure out the very bewildering and sad and overwhelming issues you brought to the forefront. and I am so grateful to have had your post to finally be able to have clarity.

I am so sorry for all that you have had to go through. you are amazing, and a wonderful resource for superb support and the education you give so generously to others. I hope with all my heart it will all come back to you a thousand-fold. keep writing - you do it so well, and your are helping legions of other's whose hearts, minds, bodies and souls are hurting.

much love, and lots of warm hugs,"

Karen, TC


My heartfelt thanks and good wishes go out to Karen, and thank you for sharing.

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?

How do you deal with your cancer?

Well, my previous post, where I was discussing the issues of survivorship, has become the most read, of all my pieces. It has provoked so much discussion throughout social media, which is very pleasing. Through this blog, I try and publicise issues, that people may find difficult to talk about. Also, our healthcare providers tend to ignore them, as there is not really a positive solution.

I speak from my experiences as a current patient who is having treatment and spending a lot of time in the system. My pieces are up to date and based on what is actually happening. You may be reading plenty of reports from different areas, but I can tell you exactly what is happening now.

My subject this week is about the contrasting ways which people deal with their cancer. This has come about, as for the first time in at least 3 years, I am physically able to go abroad for a week. (Whoopy!!) But I am struggling to get up to date with my writing and phone calls before I go. I also have several high profile events that I can't attend, as I will be away!

Since my illness, I have given over my time to raising awareness of the issues faced by people affected by cancer. This is all tumour types, not just my own. I have seen so many problems in these areas, that I thought I might try and frustrate myself further, by trying to solve some!!

 

 

Although, when I was diagnosed, I had decided that I wasn't going to be dictated to by cancer, and become a victim of it. However It does now dominate my life. Not from fear, but as an adversary. I know that I am unable to change my own situation, but I am determined to try and help others, deal with their lives, so that cancer doesn't wreak so much havoc.

I have chosen to immerse myself in this world, and people often ask me if I would be better doing something that didn't involve cancer. My problem is that I have had continual treatment, on and off for nearly 6 years, so my involvement is still there, whether I like it or not. So I would find it very difficult to actually switch off. As I have mentioned previously, there are times when being a cancer patient is a project in itself!

During my many hospital visits and numerous social media communications, I am very refreshed, by so many people, that barely mention their disease. As best they can, they have tried to claw their life back from the jaws of cancer.A proportion have been able to return to some form of working life, others have been taken to the bosom of their family, and are enjoying some quality time with their children/grandchildren.

 

Despite suffering with side effects of treatment, they are doing their best to recreate their old life. They seem genuinely shocked, that I spend most of my spare time, either talking or writing about cancer and fundraising. Obviously,I have learned so much about it, that I can now hold reasonable conversations with physicians, but they say that, "a little knowledge is a dangerous thing," and in this instance there is an element of truth.

I notice a certain amount of 'innocence' amongst the people I know, that have chosen to 'move on,' with their life. In their conversations, the subject of cancer, rarely rears it's head, and actually I feel guilty, when asked about my own situation, as I know that it will prompt a conversation that they may not want.In some respects I am quite envious of this style of coping. Outwardly, there is no sign that cancer had been a part of their life. Although I am very aware that the situation is not the same mentally, as everyone will carry those scars forever.

My style, has always been to face a problem full on, which I feel I have done with my own issues, but something has directed me to the path that I have chosen. I very much enjoy what I do, although it can be all consuming at times, but I have become more disciplined with my time now. I guess for me it is about the challenges around cancer, and to see if, in my limited time, I can improve things, for others!

How do you deal with your cancer? Have you tried to put it to the back of your mind? Or do you throw yourself into helping others? Maybe you just want to move on, like a majority of people?