You’ve got the lurgy.
‘So Mr Creighton you have a brain tumor and kidney cancer, we need to operate and remove both, it’s fairly straight forward and you’ll be fine in a few months’.
That was the start of my journey into the world of cancer and being a patient at 40 (my birthday was the same week!), up until this point my life had been simple, pretty carefree and healthy. I had enjoyed the outdoors, the freedom of enjoying my alone time and had little worries.
This all abruptly stopped the moment I was told I had Cancer, the words seemingly enable a stoppage of time passing as I had to adjust and quickly to my new role as a patient with an illness. I wanted to write a little bit about telling people you have cancer as it popped up not long ago when a fellow group member (https://www.kcuk.org.uk/) asked about telling their child they had cancer, but felt in themselves that they were to distressed to even bring it up.
I remember my first day at home after being discharged from hospital and watching my children enjoy their takeaway and being filled with both sadness and happiness at the same time, I had to make my excuses and head off to be alone where I cried for a short time.
When telling people you have not one but 2 forms of cancer, it’s important to have some kind of plan. The ability to tell just enough information that satisfies people and at the same time tries not to overly worry those around you. I remember making the calls that day from my hospital bed, where I was completely alone thanks to Covid19, I had an overwhelming feeling that I had done something wrong by getting cancer and by telling people I was letting them down.
I took the road that telling people the basic was best, I had cancer, there is a plan for treatment and I’ll be fine in a few months. I purposely held off saying anything to in-depth until I had met with the teams looking after me, after all, I didn’t even know how progressed they were or how easy they were to treat.
The range of responses were numerous, my now wife was unable to carry on with the call and needed 10 minutes to process the news before calling me back, tears, shock, silence and quiet acceptance were all the emotions that I experienced from people. But amongst these were the looks that I would receive from people, the look of almost ‘they’re going to die’ seemed to be with most people.
This isn’t their fault, people are just human after all and struggle to cope with the feelings as much as the person with cancer does, but there are a few steps you can take to tell people without too much drama.
-Space- you’re going to need space to deal with your own emotions before anyone else and this will take time, you’ll likely go through a range of feelings when first diagnosed so don’t be afraid to just take that time for yourself, it’s about you first and foremost.
-Go armed with information- this isn’t to say you have to state every single thing you know about cancer but more just enough information, enough that it will help satisfy any immediate question’s. You will often be asked follow up questions such as treatment, outcome, and life expectancy and so on. This is ok, try not to feel frustrated by this, they are curious and worried for you.
-Time- it is important that you give people time and space to process the information about you, it can be as worrying for them as it is for you. Leave space for any follow up questions. when I told my teenagers, we gave them time to come back and talk to us about it, time to process the information and I would often ask over the coming days if there was anything else they needed to know. We had allowed ourselves time to process everything and get the information we needed before we told them so we were then able to give them the information they needed.
-Google – Stay away from the search bars, this can often confuse things and leave you feeling more panicked and worried, the same goes for your loved ones. It’s important that the information comes from you and your medical team. A cancer Journey is unique to the person and no two journies are the same even if the diagnosis is.
-Together- if you have a partner then telling children together is the key here, go with a plan of action of what you want to say, make the information simple and clear. At the time I never used the word cancer as the word is to loaded. It was referred to as a growth and that I had to have a few operations to remove it. It wasn’t until afterwards that I told them it was cancer, until time had passed and I had undergone my operations. Find age appropriate words, we didn’t want to use scary words like cancer or tumor.
-You’re the expert- it is your illness after all, often you can get people offering, and all be it, unwanted advice on what you should or shouldn’t do. This is just people being caring and feeling that they are helping, people can often feel helpless whilst they watch you undergo the treatment and outfall from a diagnosis, try to make them feel valued for their input. You can take and ignore what you like.
-Revisit- try to give people and children information in small chunks, bite sized if you will. This will help stop an oversaturation and misunderstanding of what is happening, everyone is different and no one approach will work. You will need to word your conversation accordingly depending on their level of understanding, for instance, some adults will already have an idea of cancer, some will have a complete misunderstanding of cancer. Children will have very little knowledge and some will take it literally and think they have caused it or may catch it from you. Keep revisiting with younger people and check what they understand and if they have any questions, make them a part of your journey so they don’t feel left out.
-Ask for help- I’m quite notorious for doing things alone and will struggle on with tasks by myself when it could take half the time with a helper. Asking for help and admitting you are going to struggle was a massive step for me. I went from being a fully fit and self-reliant adult to one needing 1-1 support a times. I lost my driving license from the brain tumor and needed driving around everywhere. I have learned to speak more about how I am feeling, or what help I need, give your pride a back seat for a time.
-Get support- I wasn’t sure where to go after diagnosis, but a few people helped point out who can help. KCUK for instance has a wealth of knowledge and advice on their page, their Facebook page also contains a forum to go and ask others advice. You may be entitled to benefits such as ESA and PIP, but get help from the charities for the best outcome. I got a free blue badge and a free bus pass which has helped tremendously with being able to be more independent.
-It’s not your whole life- At times after I told people, it felt that this was all I was now, the guy with cancer and everything seemed to revolve around this, but it is not the whole of you, you are still a person with wishes and dreams. Carry on with as much as you are physically able to, there’s nothing wrong with going to a nice café or a walk if you are able to. It’s important to try and keep some semblance of normality in what can be a time of uncertainty.
-‘The’ conversation- this can be hard and is often the most difficult. It’s important to have the conversation around wills and wishes. I never thought I would be writing goodbye letters or writing a will, but in the early days of things being unclear it was important for me to do this and make sure that my family would be safe if anything happened. It was extremely difficult to do, but gave me comfort knowing I had done this for them. I didn’t tell my wife where the letters were until I really thought she may need them and she was under strict instructions not to read them unless the inevitable had happened, luckily they were not needed but I am glad they were there and ready all the same.
Having cancer is a life changer, even if it not as serious as some peoples diagnosis, you will change you outlook on things. Little quarrels or irritants become so much less important. Personally, I tend not to get wound up by the same things now. There is no one piece of advice, everyone will deal with the diagnosis in a different way.
Try to keep who you are, people can often loose themselves in the midst of cancer, but keep some routine, keep the things you enjoy.
