This week brought me a fresh dose of reality when I had another two days of my regular treatment. It has been six weeks since my last session, as we slowly look to stop this regime, which has continued for nearly three years. I have had more than two years of fortnightly sessions which has now had the optimum effect and we need to slowly stop it and then see if my body is finally clear of graft v host disease (rejection issues.) Slowing sessions has enabled me to have more personal time, and my health has been good, so I was starting to forget about my issues for a bit.
I have been able to do lots of exciting things in relation to my work, so my mind has been occupied positively. My treatment is very specialised and is specifically for people that have blood cancer and stem cell transplants, and I meet so many lovely people who have a variety of issues. The treatment takes time to be effective, so it is not unusual to see the same people frequently. This time I met some regulars and some relatively new patients, and it occurred to me from talking to everyone in the room, what a real mixture of emotions we go through once cancer enters our lives.
There I was laughing and joking with everyone feeling pleased, and looking forward to my treatment ending, but there were people who were frightened and apprehensive as they started their own regime. I understand totally what they were going through as I also have been in that place. But it made me think what torture we endure with the constant shift of emotions, rarely staying on one cycle long.
During my own seven years, I think I have encountered every possible emotion, from despair and desperation to elation. But the most difficult thing I find is not knowing from day to day how I’m going to feel. Obviously my mental well being is linked to my health, which at times can be so unreliable, my emotions fly all over the place. Currently I am struggling to believe how positive things have been, and I find myself already preparing for the next cough, cold or flu session, when I should just be enjoying this spell. I’m looking for complications which currently do not exist!
But seeing some of my fellow patients again reminded me what a fragile life I now lead. Some have become worse, despite their treatment but others have also finished successfully. However we all know that with the nature of not only the cancer we have, but the rejection problems we encounter, it will only be a matter of time before we face our next challenge.
One of my friends on the ward has been treated for 8 years, and is slowly also reducing his treatment. He was concerned that his benefit would be taken away, and would be unable to work again, at the age of 47 he felt he was finished financially. These issues are reality for many patients, including myself. Not just trying to stay alive, but trying to create some sort of life to live, with unreliable health as a constant companion. Another gentleman there was a builder, now he is unable to even walk and needs his wife to push him in a wheelchair. I can’t even begin to imagine what is going through his mind.
In that room there was an incredible range of emotions happening, and we have all had most of them at some time, how do we cope though? During every week I am communicating with many people affected by cancer, either face to face or via social media, and things can change for us all so quickly. On Monday I will be helping at the monthly Prostate Support Group at my local cancer centre. Some guys will be better than last month, others too sick to even attend.
Nothing that was talked about prior to my treatment could have prepared me for what cancer has done to my mind. Some people are affected more than others and differently of course, but there is no mistaking that psychologically and emotionally we are changed by a cancer diagnosis. On reflection in my own case, although the treatment was horrific for a long time, then complicated later, the pain has lessened, but in my head is where the chaos is. My struggle is to focus on the things I have, rather than the things I have lost.
You would have thought that after seven years I would be able to do that, but it seems I can’t! My life has been enriched in so many ways since cancer introduced itself, and I have many things to be thankful for, not least my ‘extra time.’ But even now I struggle to understand what has happened to me, I still feel that I am living someone else’s life.
This week I took time out to visit my ex business partner in the East End of London. So much happening and new ideas developing, which I would have been at the centre of. I felt I could still add a lot to things, but now, just the travelling exhausts me. Frustration was the emotion I left with, as I knew that was yet another thing I would never be able to do. As I deal with my own life and struggle frequently with these issues it is also difficult to see how we can solve this problem. Most physical issues have an answer, but these difficulties are unique for all.
I’m not convinced that drugs and counselling, are long term answers, and I am sure that we need to take into account our psychological and emotional wellbeing when talking to patients during their own journey. My experience has shown me that there is a silent majority out there doing the best they can to cope, but are struggling from day to day. The truth is there are currently not enough of the right resources available, and until we understand the problem correctly it will be impossible to work on a solution!
How do you or your friends and family deal with the psychological and emotional issues of cancer? Are you one of the lucky ones who has things in check now? Please feel free to share your thoughts and ideas here.
Great blog Chris. So much of it resonates with me. It’s not easy is it? All the best
Thx Helen. No it’s not easy at all, but difficult for others without experience to understand those issues. I never anticipated that side of things, I was more concerned with the treatment!:)
Superb Blog as always Chris. I hear this so much. We have some of the best medical treatments available and yet the emotional support is wanting, only through the fantastic work that you do. More work needs to be done in this area.
Thx as always Ken. It is something I didn’t recognise either, before my own experience. But it is so important now, as more people live with cancer and the side effects of treatment.
A better problem to have of course but a problem just the same. So many people still suffering in silence. Thanks for all the work that you and your team do too!
It is something we have recognised but frustrating at times in how best to support Cancer patients. Our theme is now ‘Are you Living with Cancer?’
Good article again Chris. Although I experience the full range of emotions that you talk about, some psychotherapy has helped focus on the things I can do rather than what I can’t do. It’s far from perfect, but it works some of the time, which is better then not at all. (The specialist photo therapy, a form of art therapy, I did through Barts was a great help)
Hi Pavlos, so lovely to see you here. I haven’t seen you for a time now, and hope things are going as well as they can. People have talked about the psychotherapy thing but it seems the resources are few, and I don’t know many people that have access to it. Yes, I understand that art therapy is particularly good, and I know how much you love your photography.
The problem I see is that the side effects seem to be so long term. I look forward to seeing you soon, Chris
Thank you Chris, you’ve put into words how we all feel once diagnosed, and how life changes forever, then changes again and again so we never know quite where we are or how to respond emotionally. I try to focus on the fact that I’m still alive which is fab, but it’s also the whole deal about still wanting to contribute and make a difference and to retain a sense of purpose. None of us want to be that prematurely aged sick person consigned to a corner of life. Maybe one of the things we might be able to contribute is a better insight into how body and mind are so tightly connected by emotions, and how one so acutely affects the other. We also have been forced to slow down, which means that we notice the nuances of life sometimes that once we wouldn’t have been aware of. We are now life’s watchers and waiters whether we like it or not. Our perspective has changed irrevocably, and maybe we can contribute to wider society by sharing this new way of looking at things, in the way you have shared so beautifully and eloquently in this post.
Hi Yvonne, thanks so much for sharing your thoughts here. You are the great voice of experience and you have summed things up so eloquently. Our perspective has changed dramatically you are right, and I am a very bad watcher and waiter!
I think you are right too, about being able to contribute to wider society, and I know you seem to have taken to that task like a duck to water! It’s a new life and we have to make the best of it.
Wishing you well with everything you are doing, and so delighted we ‘met.’ Chris x
Hello Chris,
As usual your words come true to how we and other people feel. It is hard going is’nt it? I found when my treatment had finished it was in away like a bereavement sounds silly but in a way it means all the lovely people we have met on our cancer journey have either passed away or gone on to make marvelous recovery just like us. I suppose life is like being at school and we never finish. I too felt when I went back to my work something had changed suppose it could be tiredness as mentally we think we can do what we were able to do before. I know you like me have family who are precious to us, I suppose it helped me a lot that I had a wonderful first husband we were married for 29 years and he had only 1 lung from TB in the Navy and he was one of the most patient men I have ever come across, he taught me patience and I think that helped me to get through my 3 1/2 year cancer ‘do’ it also helped to cope for the family and friends. I feel so lucky to have been able to be with my 2nd husband of 26 years who has looked after me so well. I feel so blessed, when we are in that black tunnel we have to be patient to reach the light. To be truthful it has been only over the last few months that I have realized how ill I was, so I think it is a state of mind, it was for me. I also think the help you are giving to other people, will help you to get through the next milestone for you. I am so very very pleased that you are coming to the end of your treatment and thank you for sharing your posts.
Georgine xx
Hi Georgine
Thanks as always for being so open and honest about your own experiences to. As much as I enjoy writing and facilitating this site, I am continually learning from people like yourself.
I have just completed my latest review at hospital and they told me I am still grieving for my old life, this is something I never realised, but I know the new limitations of my new one. Indeed like you I have a loving and supportive family who understand what this experience has done to me and are helping me put a new life together. We are both so lucky in that regard.
We are all learning from your thoughts too Georgine and thank you so much for all the support you give me and my work, Chris xx
Chris
This one made me cry. You always make me think in new ways you push my thinking by your writing. Thank you so much I’ll need to compose myself before replying properly.
Much Love
Karen x
Thx so much Karen, and so pleased you are enjoying the site. Your support is always appreciated, Chris xx
What an amazing Blog.
The only thing they dont prepare you for is *How You Will Feel*
Yes the gift of “Extra Time” is a blessing ???
Days filled with treatment . Pain. Uncertainty.
People mean well with “I know how you feel”
No they dont.
How do we cope ??? No one has given that ansew yet ….
Hi Lauren, thanks so much for your comments, and so pleased you enjoyed the piece.
No, there are no answers yet. I guess my answer to that question is, differently. Some people find strength they didn’t know they had, and others crumble when you felt they would be strong.
Thanks for sharing your thoughts, Chris
I am now in tears of relief knowing am not the only one ,I thank you Chris for putting words down ,I have been battling lymphoma for 7 years it’s turned 3 times had a stem cell transplant and now in remission where I feel the true battle starts am left with no job and on morphine daily just to deal with the pain ,I feel a great relief am not alone THANKS Chris
Thanks for sharing your own feelings Derrick. Yes, I felt exactly like you, which is why I started this site. Dealing with the disease and treatment is one thing, but the social and emotional impact is truly another.
These are things which people don’t see, and find it hard to understand. I, like you am in remission which is great, but there is a hole where my old life was. Running this site alongside the speaking I do, keeps me occupied and I can use my experience to help others.
I wish you well with your own stuff and please feel free to get in touch if I can help with anything. Chris
Hi Chris this is just where I’m at at the mo. Treatment keeping me alive-grateful, treatment taking so much out of my body-hard work and my mind working overtime-exhausting & frustrating! My secondary diagnosis was only in May and up to now I have been mentally and physically very strong, but with the constant chemo and side effects really kicking in (this is a permanent thing until disease progression or I just can’t tolerate any more) I’m on a wobble but I have no choice but to battle on! Thank you for sharing it helps to know this is our new kind of normal!
Hi Abi. I wanted to write this piece because I knew that it is such a massive thing for people affected by cancer. I also thought I was tough, and have gone toe to toe with the disease and treatment for 7 years, and I find it tough daily too.
I’m so pleased we have connected on Twitter too, and that you are also blogging about your experience. I find that very cathartic when I write, and I hope you do too.
The road feels bumpy at times for sure, but on my own journey there has always been something to pick me up when I start feeling down. I wish the same for you! looking forward to your new blog and wish you well with all, Chris
I’ve just read your latest blog – interesting, as always. However, one thing I’ve realised is that the feelings and emotions you describe are not only experienced by cancer sufferers. I think some of us who know people with cancer also tend to feel some of those emotions. Because Roy and I have so many friends and relatives who have either died from cancer (for Roy his father and two siblings, for me my cousin and my Dad, and for both of us two friends) or who are living with it – three friends and several acquaintances, to date – that we tend to focus on when the other shoe will drop and how long do we have before it’s our turn. We also understand the fragility of life and it’s a sobering thought.
I’m not sure that Roy is quite so immured in this feelings as I am – he is much more positive and pragmatic. However, I do know a little of how you feel, though of course it’s not quite the same for me. But what I do know is that we all have to find a way to enjoy what we do have or we shall waste whatever time we are allowed. “Carpe dime” (seize the day) is a great maxim to live by and the challenge is learning how to do it. Many times in my life I’ve found that bad things take me by surprise and are, therefore, harder to deal with. Unfortunately, this has had the effect of making me always worry that something is lurking around the corner that I’m not prepared for. In truth, there is no preparation that actually helps you deal with whatever these bad things may be, but I have to learn to get out of the habit – not easy.
I find it particularly hard this autumn – not a good time for me as the clocks go back – something in me really struggles with lessening daylight – as with many other people. I’m sure you know many people similarly affected. But I am very morbid this year, following Dad’s death and having all the work we have to do on his affairs – obtaining probate, emptying and selling the house etc – all very sad. I know he had a long and full life and a good death, but he was still my Dad and that house has been there always for us – it’s sad and saddening. It has really brought home to me the fact that everything ends.
Anyway, I just wanted to say that for many, and sometimes different, reasons, I understand some of the feelings and emotions you allude to.
You are absolutely right, that those emotions are shared widely and are very definitely not specific to people affected by cancer. Your experiences are very varied and close to home, and as I know your personal circumstances I can fully understand what you write.
The point you make about something always lurking round the corner, is how I feel about things now, and it is sometimes difficult to concentrate on the positive things! Also you are right with an important point about the lessening daylight, it can be a big psychological thing for many people as winter sets in.
I know it is a difficult time for you guys currently, and I hope that you move out of this phase of your life as painlessly as possible. A massive thanks for sharing your very personal thoughts for the benefit of others. Looking forward to catching up, Chris
Hi Chris, It is so good to read that your treatment is coming to an end and that it has had the optimum effect. It is strange how our treatment becomes such a major part of our lives and then when it stops there is some kind of void.
Like others who have commented your blog resonates on many levels of thought and particularly emotion. I too find myself welling up remember the journey and still being effected emotionally. You have described so well how the majority of us feel. And like yourself its the not knowing how I am going to feel from one day to the next that disturbed me so much. Our days are precious and I am sure, like yourself we value the many opportunities that this journey has provided us with. So why do we feel so utterly helpless and depressed at times? I cannot seem to get to the route of the problem, and I feel very few truly understand. I work extremely hard at my on well-being…..An ah-har moment! maybe that is the answer….we exhaust ourselves, when we should just be ok that sometimes we need to feel depressed and sad and other day we can rejoice at being alive, (and value the importance on building a new life).
I believe having a focus and a purpose is so important but that’s easier said than done…. gosh I could ramble on and on.
Lastly tho before I go, I went to a talk this week by my breast cancer surgeon and I must share that he passionately spoke of the need for change and the importance of ‘survivor-ship’, as opposed to surviving. And that the philosophy of ‘less is more’, in respect to over treatment. It helps me to believe that things are changing behind the scenes.
Thanks Chris for sharing your thoughts and experiences with us, its a wonderful blog, (even if it does hurt!).
Very best wishes to you.
Tricia
Thanks so much Tricia. One of these days I’m going to make a blog out of your comments, you write so well, and thank you foe sharing your thoughts too!
We seem to share many of the same emotions, and it is very difficult at times. I find it hard to explain myself, so I can understand why others might not ‘get it.’ The point you make about purpose is a good one, and I’m pleased that this site keeps me busy in between treatment. It is certainly a great focus and provides me with many positive things too.
Your talk sounded interesting, things are indeed changing for the better, and I’m pleased you also heard that. The patient voice is getting louder, and the younger generation of clinicians are beginning to understand the new challenges we face in survivorship.
I’m so pleased you are enjoying the posts and thanks so much for sharing your own experiences, which have great value to me in my work and for other readers, as you can see. Chris x
Hi Chris I’ve just read your blog and found it a great help with the stage I’m at in my treatment
Good luck with everything xx
Thx so much Heather, and really pleased that you find the site helpful. I wish you well with your own treatment and please feel free to drop by again and let us know how it is going, Chris