When I started this blog, one of the first people I asked about it was my 15 year old son, J. I wanted to make sure that he was comfortable about me sharing the story of my melanoma. He was very supportive and thought that as well as helping me, it would also help other people and their families. He was also very helpful with the technical and design aspects of setting up the website!
I have always been aware that J could read my blog at any point and therefore I wouldn’t write anything on here without thinking about the impact it may have on him and also the rest of my family. I am very honest and open with him about my cancer; it was a decision my husband and I made from the onset. With that in mind, I asked J about how I could write a blog about our experiences of cancer from the perspective of mum and son, in the hope that it might help others. J has helped me write and edit this and for that I am both grateful and proud of him.
Telling J about my initial diagnosis
I know a lot of people might say this in hindsight, but after I’d seen the GP about my “dodgy mole” I knew that it was likely to be cancer. When the plastic surgeon saw it and started talking about lymph node biopsies, I started to prepare myself for how I was going to deal with a cancer diagnosis. I also spent a long time thinking about how I was going to tell J, who was only 11 years old at the time. My husband and I talked it through and decided that we would tell our son as much as he needed to know at the time and that has always been our approach.
I told J about the initial biopsy (or ‘Local Excision’) for two reasons: firstly, I thought that it might be sore and he would spot that something was wrong and secondly it was during the Covid pandemic and I had to shield for surgery and so I felt he needed to know why. I didn’t mention cancer at this point, but instead said that the dodgy mark on my arm was causing me a few problems and so I was having a very quick operation to cut it out. J remembers that at this point he didn’t really have any questions.
Explaining my cancer as cells having “Gatherings and Parties”
I then spent time between the first biopsy and waiting for the results thinking about what I was going to say to him if it was melanoma. It may sound strange, but I used to rehearse what I was going to say to him whilst I was in the shower – I knew that he was unlikely to come into the bathroom and no one could hear me whisper the words whilst I was in there. I wanted to make sure I had the right words because if it was bad news I could then go into autopilot and not be worrying about what to say. I’m not sure if other people do this, but for me it gave me comfort to think that if it was melanoma, I was prepared.
To be honest, nothing can really prepare you for the news. When the consultant called me and said it was melanoma, I remember thinking that I already knew what to say to my son because I had rehearsed it so many times. I didn’t want to cry, I wanted to be very calm an explain things as fully as I could. I remember sitting with him in his room, it was just as he had started secondary school. He came home and I said we needed a chat.
I explained that there are cells in your body that sometimes misbehave and when they do they form a “bit of a gathering” and sometimes, without treating them, those gatherings turn into parties. I said that the “dodgy mole” that they had cut out of my arm had cells in it that were misbehaving had formed a little gathering and that the surgeon had cut them out but wanted to make sure no other little cells were misbehaving close by and were about to start another “bit of a gathering.”
I used the words “gathering” and “parties” because I thought that they sounded less scary. I remember Joshua stopping me and saying to me that when cells misbehave that means that they are cancerous - it turns out he had been learning about this in biology. He was very matter of fact about it all and asked me a few questions about the next biopsy I was going to have. He hugged me and said after the biopsy him and his dad would be looking after me. When we were writing this blog post, Joshua told me how the words “gatherings and parties” really helped because they sounded less scary and intense. Even now, three years later we still refer to them as “gatherings” as it not only helps J, but to be honest it helps me.
Dealing with Stage 4
Even though my cancer has managed to spread to my lungs, brain and neck the metastases have always been found early due to scans and up to now have been tiny. This has meant that when I have told J, I have always been able to say that the cells are having a “gathering” again and that treatment would hopefully be breaking up their fun. I have always told him as soon as I have received the news (or as soon as he has arrived home from school.) I share the bad news but I also share the good news because that gives us hope. The good news might not necessarily be about me, it might be that I have heard from a fellow melanoma patient who has had a good scan or has responded well to treatment because other people’s stories of good news gives us hope and strength.
When my adjuvant treatment finished at the end of 2021, J asked if my cancer would come back. I was honest because I never want to tell him that all will certainly be ok because that is not true, there is always a chance of other “gatherings” forming. So at that point, I explained that we hoped it would be gone, but that there was always a chance it could return and so by having regular scans we could see if anything was happening and could deal with things quickly. Looking back, when I received the news that the melanoma was back in my lungs, I was glad that I had told him that there was always a chance that this could happen. When I told him about my lungs, he turned to me and said “Well, I knew there was always a chance of “gatherings.” He likes to be able to visualise the “gatherings” in funny ways – in my lung one of them was about the size of a pea so we joked about how a pea could be easily squashed and we joked about how nervous the cancer cells should be when the treatment started and if they could talk what they might say.
We laugh, we cry and we muddle through together
A few weeks ago, I had to tell J about how another brain metastases had grown – this time in the area of my brain that controls balance. He gave me a hug and asked what was going to happen and then we laughed about how my balance has always been a bit “iffy” anyway. We always try and laugh about things, that’s important because laughing makes things less scary, we swear more too because sometimes there just aren’t the right words to say.
A while ago my son and I were chatting and he said to me that cancer had changed me. He said that before the cancer I was quite stressed, but cancer had calmed me down. I think in some ways that is true. He also said to me that cancer is “normal” in our family, which upset me a little as I wish I could be a mum to him who is healthier and doesn’t have this disease. However, what he meant was that it isn’t something he thinks about everyday because “normal life” takes over and cancer is just part of that.
J explained to me, when we were writing this that when I was first diagnosed he felt quite stressed, but he feels like he has adapted to it the best he can and doesn’t worry about me day to day. He thinks that seeing things in terms of ‘parties and gatherings’ is easy for children to understand it makes it sound much less intense. He told me that he stays away Googling melanoma and instead wants to get his information from his dad and me because he knows I will tell him what he needs to know and if I don’t know, then I will ask. We also talk about skin checks – not to scare J – but so that he is aware, like everyone else should be.
Of course, I can’t be completely sure that he never worries about it. I don’t take it for granted that he is ok. As soon as I received my diagnosis I contacted his school. My husband and I felt that it was important that they knew what was happening in my son’s life and if he needed support that they were aware. This may not be an approach that everyone adopts, but for me it was important. I have also been back into school recently to talk to them about my stage 4 diagnosis and that they are aware of this so that again, if my son needs support he knows where to go. I also have details of the local cancer centre and have spoken with them about the support they offer teenagers just in case he needs it. So, as I say to my son we have things “in our back pocket” in case we need them. Counselling for me is part of life and I have been in therapy for years, my son knows this and so I hope he understands that again, this is something that isn’t scary to access if he needs to.
We don’t have all the answers, we always say we muddle through together and how we approach cancer in our family will be very different to how others do. We get a lot of strength in other peoples' stories and that is why we wanted to share ours with you.
Wishing you lots of love
Charlotte & J
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