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?
To be an empowered patient I wonder how much we need to know – I’m not exactly talking about side effects but more the nitty gritty of diagnosis and findings. Along with some door effects, I have the impression that this isn’t fully revealed either.
Having thought about this topic a lot since the original comments were written, I am sure that there is a lot that we are not told about either our diagnosis, or treatment side effects.
It is a good question you ask also. “How much do we need to know?” I guess it is a delicate balance! Chris
I feel very angry that I wasn’t told about all the possible side effects of my treatment for womb cancer. I am now 3+ years down the road from finishing my treatment (surgery, chemo & radio) and have severe long term side effects that impact on my quality of life. Had I known then what I know now, I might have questioned the need for all the treatment.
How can we, as patients, give our consent for something if we don’t know the full facts?
My quality of life now is far worse that it was when I was diagnosed – I sometimes wonder what was the point of having the treatment!!!!!
Sorry to hear all about your problems! Your example is exactly what the issue is for the patient, if you don’t have all the information. How exactly can you make an informed decision if you don’t have all the facts?
That is why I personally, like as much information as possible, however I do understand that too much, can be just as confusing.
My own case was more straight forward than yours. If I didn’t have the treatment, I would be dead, so no choices to make really. I do have a reasonable quality of life, but with many side effects, I wasn’t told about.
Your situation is exactly the one I was worried about if they only give you certain pieces of info. Unfortunately Kaz, your own example, is still so common, and it is a big concern to me that people do not understand what may happen to them as a consequence of their treatment.
As we both know, a cancer diagnosis is an emotional time, and it is not always the right time to make life changing decisions, but there are constantly time pressures.
Thanks for sharing your experience with the readers, and hopefully through our work, we can improve things for others. Chris
I would definitely like more information. I always feel as though my consultant has time pressures and the more questions I ask the more stressed he becomes. For example – he has never shown me any pictures of ct scans or pet scans yet other consultants involved have put the pictures up on the screen and let us see comparisons over time. The wording of explanations can be vitally important e.g. You have a new problem in the abdomen, next time he says small intestine, next time he says bowel. When I try to clarify I don’t seem to get a clear explanation.
Side effects I am not as keen on having full details – I don’t want to worry about things that may not affect me.
Thanks for your blog. I really appreciate it
Many thanks for your above comments. Yet more examples of poor information giving. I agree entirely about the time issue, with your Consultant. People feel very rushed, which is not ideal when talking about a life threatening disease.
I have also experienced clinicians talking in such technical language, that the patient will struggle to understand what is being said! Unfortunately, it seems that every talk they have with patients, must be tailored specifically for that patient. A skill which in many cases is sadly lacking.
Having had many conversations on this subject now, there appears to be a 50/50 split. Some of us want all the info possible re side effects and others don’t.
Many thanks for sharing your comments, as this is what the blog is all about. I am very glad that you are enjoying it and look forward to welcoming you back soon! Chris
I understand everyone’s concern, when I was diagnosed in March it was information overload and very scary. However now that I am several months down the line and just about to start a different chemo I am on the side of knowing the possible side effects of the drugs. With my first lot of chemo I reacted to almost all of the side effects, good or bad and I survived them although they were not successful against my tumour. Thankfully I had an operation in July which removed the tumour and good margin and there are currently no signs of any cancer in my body. I start the new chemo next week and yes the side effects do not look great but I managed to get through the first lot of intense chemo so I have high hopes that I will get through this lot. My consultants have been brilliant as have my nurse specialists, yes you really don’t want to hear all the doom and gloom but it is their job to prepare you for any possible outcomes. I know that I have a long journey to go and that some days will be harder than others but I am mentally prepared for the continuation of my fight thanks to the professionals involved in my case. I have 100% faith in their abilities and the care that they have shown me. My heart goes out to anyone though who has not had the same care from their consultants as I would have thought that this is a vital part of their profession. I am however a little disappointed with all the negative stories told about people who have not been successful in their fight against cancer, it would be nice to read some positive inspirational stories instead. I had to unlike the charity for my type of cancer because it seriously affected my state of mind and I can’t afford for that to happen. I wish every cancer sufferer a successful journey and a good future. Take care, Angela
Firstly I would like to thank you for taking the time to write these very personal comments. One of the biggest values in this blog is the sharing of experience! We can all learn so much from each other. I am enjoying your positivity, and I agree with you entirely about your medical team.
I have entire faith in my own team, which makes things much more comfortable for me. I have been fortunate that I have had the same people for 6 yrs, and they understand me as a person, which is key in the treatment process.It is so good to hear that you are mentally prepared for the next step of your treatment, which I know, can be very tough.
Unfortunately, it is not always good news that we hear. A cancer diagnosis is both difficult to give, and receive, and each case is unique. How we deal with things is very individual, with no right or wrong. Just what feels right for you. There are many times when things do not go as well as expected, which is as much a part of the story, as when things do go well. How much of each we listen to, is again our own choice.
I understand your comments about negativity, and you have done what is best for you. I hope that you find this blog to be positive for you, and look forward to welcoming you back soon.
Many thanks for your comments and I wish you well with your personal journey, Angela. Chris
Chris I think you are right regarding information one size most definately does not fit all! In my case With the brain tumour specifically I would have liked ‘phased information’ as I progressed in my recovery. No one ever mentioned the words, long term fatigue or low mood and depression yet in my subsequent experiences most people I have met with similar tumours have both. I am trying to persuade the hospital I was in to produce a meaningful leaflet with all the obvious info in it as I did not receive anything!
Yet again another stimulating post
Thanks so much Dawn. I see both sides of the information coin. Personally I like to know everything, to help me make decisions. But others want very little. I guess it is up to the health professional to decide when they meet you.
Good luck with talking to the hospital about a leaflet. Please let me know how you get on. Thanks as always Dawn for sharing your experiences. They are invaluable for others. Chris