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?
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 nix 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,
Firstly, I would like to thank you for writing the above. This was obviously very difficult for you, but I feel very privileged that you have chosen to share your story publicly. I would also like to apologise for the delay in responding to you.
I have re read your comments so many times, and needed to gather my thoughts correctly before I responded.
For you, and the massive amount of people out there like us, is exactly why I started this blog. I could not find any effective help, for the issues that I was facing. I looked at various support websites etc, but none really tell it as it is! I thought that I can’t be the only one who has these issues, so I started writing.
Unfortunately, it seems that our issues are common, as I feared, but with the boom in social media, we can all find and support each other through these. It can’t cure us, but it means that we are not alone, which is so important.
What I try and do with my negative stuff is attempt to turn it into something positive. Not always easy I know!! I was so moved by what you have written that I am going to use it as the basis for my next post. This will enable people across the globe to read your story, and maybe help them try and find some answers.
Thank you for taking the time to share your incredibly moving story, which will be a fantastic help for others. By sharing experiences we can all learn. I wish you well Karen, and hopefully will see you back on the blog, soon. TU so much, Chris XX
My impression is they don’t tell us about all the side-effects because it won’t help us it will scare us more than we already are, and it would take far too long to go over it all. In my opinion most of them avoid taking about side-effects since most would be what-ifs, and once you tell them you have ‘em not much they can do. Sort of one big conundrum.
I think you are right. There are so many side effects from the various forms of treatment and who suffers which varies too, so anyone would have a different combination from anyone else of initial symptoms from the cancer and from the treatments. There are lists if you google each treatment. It is good to mention them when with the doctor as there might be a different medication that won’t have them or they might notify the manufacturers so they can do more research.
I hadn’t registered that my own loss of confidence might be connected with the cancer as I am now 68, 64 when diagnosed, and thought age might be a factor in my not wanting to do new things. Or at least I might start but then find I am too tired and can’t cope. Having been, as you were, more active before I feel my life has shrunk. But then I remind myself I am still here and still see my family and grandchild, so am grateful.
As you say, every case is different, and I guess it is difficult to talk about things that may not happen, but always good to have a conversation with your doctor about side effects.
Ref the loss of confidence thing. I am shocked it is happening to me, as socialising was also a large part of my work, but after the years of continual treatment I have found it harder and harder to go out into large groups as I get tired very quickly.
Like you, I am grateful for what I have, but I am also concerned that my lack of interest in socialising affects my wife, family and friends, which is not fair!
We try to find a compromise that works. My wife understands, but maybe it is me who feels worse about it? It is always helpful to see the positive things as you obviously do.
My thanks as always for sharing your experiences, and wish you and your family well, Chris
Many thanks for your above comments. Actually you may well be right! Personally I would like to have known a few more what-ifs, so that I was prepared if those issues did present. A lot of us struggle to recognise if things are normal for our condition or not. At times, you feel like you are the only one feeling like that, but then you are told that this is common.
I certainly take the point that a lot of us might worry unnecessarily about something that may not even occur. This is yet another example of how individual cancer is. Not only in the way that it affects us physically, but also what we require in the way of information too.
Conundrum is certainly a good description! My best to you, Chris
Chris amazing website!!! YOU ARE AN inspiration to all of our patients and your a wonderful patient 😉
Firstly, thanks for taking the time to check out the blog. I feel that by sharing my experiences openly, it may help others when they look into their own life. I can’t change the negative things that have happened, but I am trying to make something positive from them!
You can see first hand, the difference that we can make, and thanks for your interest, and taking the time to comment. It is much appreciated, from a member of my nursing team, dealing with patients like me, continually!
Without the care and attention you guys give me, I wouldn’t be around to write this blog, so the biggest thank you is to you and your team! I do my best not to be too much of a pain 🙂
Thanks again for sharing, Chris
Hi Chris, i hope you don’t mind me sending you a message, Emma willis posted your blog link on facebook and your blog sent me here, so I sent you friend request.
I’m amazied by your blog, it’s like looking inside my head. I am in remission from Non-hodgkins lymphoma after a hell of a journey. I’ve lost all my confidence and direction and yeah, I feel very lost. I have just joined Shine in the hopes it will help me find my way and now I follow your blog.
I hope we can keep in touch one way or another while we wander through this misty phase,
Many thanks for the above comments, which are so useful for others to read. My main priority when I started this blog was to show people that they are not alone, and that many of the feelings they encounter are completely normal. as you can see from many of the comments posted across the blog, that people are discovering this.
Sometimes, it takes seeing someone else’s experience to resonate in your own life. That is why I am very pleased when others find the courage to write on here about their own experiences.
I know we will be in touch, and thank you again for sharing. I wish you luck on your own journey too, Chris